Down Dementia Drive

This has been a big part of my story in recent years, and I struggled for a long time trying to decide whether or not I should share it. My hope is that in finally speaking up, I can encourage someone else as they experience caring for their own loved ones. 

Dad and mom in their younger days

In June of 2003, I sat on a ship in the port of Seattle and made a phone call that would be a crossroads in my life. I was checking in with my folks before going off grid and my dad gave me the really difficult news that he had been diagnosed with lung cancer. 

What followed were several trips west over the next 12 months from our home near Philadelphia. The frequent trips were to check on my parents, until the last one that kept me there for several months taking care of dad as he came to the end of his life. 

It was with him that I first experienced the ravages of dementia. His was the result of his cancer metastasizing.  

I had no idea that it was merely the beginning of a very long journey.

Our last family picture

Dad, shortly before his death

During that time of being dads caretaker, I spent a lot of time with my mom, and began the transition into being her caretaker as well. I just didn't know it was happening. 

Mom's dementia was harder to recognize than dads. His was expected because of his disease, and quite frankly, he did and said some funny things. One of the best laughs I had during that time was when he told a doctors waiting room full of people that he was a "solar powered sex machine". The cancer treatment had stolen his hair and the dementia had stolen his inhibitions but neither had stolen his sense of humor.

But because moms style was always "ready, fire, aim" it was hard to know what was really "not right" and what was "just mom". Erratic behavior was kind of her MO, but one of the many things she told me as I took care of dad was that she would never be as easy a patient as he was. It was a prophetic statement.

After a few years alone in the house my folks had once shared, and with more trips west for me to shore her up, it became evident that mom could no longer live alone and I could no longer be expected to keep her going while living thousands of miles away with my own family. Yes, I had two beautiful children and an amazing husband that made up my life. 

So the decision was made by my brothers and myself to move her near me. It just made sense and the Lord opened the door for her to be able to afford it. My brothers and I were in agreement, and as time passed, we quickly saw the wisdom in it. 

Shortly after the big move

She was able to enjoy living independently for a time after moving here, but it wasn't without significant time on my part to keep her going. Cleaning her place, doing her laundry, changing her bedding, doing her hair, doctors visits, the trauma of getting her to the dentist, managing her medication, cleaning up messes created by bowel incontinence, and the frequent reminders that she needed to bathe. 

She often jokingly said it was like I had another child. To which I would respond "No it's not. Because my children obey." She found that hilariously funny.

There was also the anger. She had always been a very angry person, but it went to a whole new level as she deteriorated. She made frequent erratic claims of people stealing her things, paranoia because people were talking about her, and even accusations leveled at me for various imagined offenses, angry late night phone calls complete with screaming and hang ups... 

And she was so afraid. Fear was a constant companion through her life, but now she knew something wasn't right with her. She had no control over what was happening in her head and her fear just compounded the anger she felt.

In actuality, no one stole anything. She squirreled things away because she was afraid they would, and by God's grace, I quickly learned her hiding places and was able to restore her things to her until "someone stole them" again. Her neighbors were so very kind and were the reason she was able to stay in independent living as long as she did. As much as I was with her, there were still things I didn't know because they were all so good at covering for each other.

I had gone down a hole that I didn't even realize existed. 

When the time came to move her into assisted living, I really believed it would get easier, and some of the tasks were lifted from my shoulders, but some were not. In addition to her own late night calls, I began receiving them from the kind and caring nursing staff informing me about one thing or another. 

I have so appreciated the care she's been given, but have to tell you, I get very tense when the phone tells me it's a call from the "Raisin Ranch". (a term coined by my funny big brother) She falls often, and is at times very combative with staff. 

She began experiencing "sundowners" shortly after moving into assisted living, and would often pace the halls at all hours of the night. Those times always brought a call from the staff and I often made the trip to try and calm her down. That was never successful because I wasn't the one she wanted to see, and she just wanted to "go home". In her mind, I was the reason she couldn't.

I quickly learned there is no reasoning with a person suffering from dementia. Distraction is your best ally. 

Little brother teaches mom the finer points of taking "selfies"

I made several trips to the ER with her, most often late at night. Those were especially difficult because her default to worry became exponentially amplified as she aged and that stress brought on the incontinence that is so much more difficult to deal with in a public place, but I had a lot of practice. The ER runs also had to happen when I was out of town, so I learned how to manage those long distance.

My parents changed me, fed me, and kept me clean as a child, and dads illness called for me to do the same for him. After his death, the task of doing so for my mom also fell to me. I've cleaned up messes that I would have insisted I couldn't bear to deal with, but you do what has to be done. 

Mom and dad were born the same year, and he died entirely too soon at 75 years old. After moving here and spending 2 years in independent living, and 7 years in assisted living, mom was registered for hospice care 2 years ago. She is now 91. 

I just recently realized that my journey down dementia drive started in 2003. That's a long time, but when you're in the midst of "it" you just lose track of how much time is passing.

While mentally mom is gradually fading away, relatively speaking, she's in good shape physically for her age and state. While she spends most of her time in a wheel chair, she's still mobile with a walker for short distances. 

She hasn't known me for quite some time and seems to think I'm just another one of her caregivers. As long as she's in her familiar space, she's fine with me being there, but COVID-19 has made that impossible. Now visits have to take place in a beautiful outdoor area that is completely unfamiliar to her. She must wear a mask and so do I, and the fear of being left in this unknown place with me causes a fear in her that results in completely shutting down. She's still chatty and relatively responsive in her own room, but during a visit with me in this outdoor space, there is no speech, no response... nothing. 

So until I can once again visit with her in her own space, I won't see her physically. Her own feelings of safety and security are more important and that's stolen from her when I try to see her right now. 

The setting is lovely, but too stressful for her

This time only reinforces the importance of making sure your loved ones are well taken care of in your absence. In addition to the nursing staff in her community, mom also sees a nurse practitioner and her hospice nurse on a weekly basis. For now they are my sweet and faithful eyes and ears and they sing the praises of moms assisted living home.

Bottom line? Dealing with dementia is a dirty, hard business, both for those experiencing it themselves, and for their caretakers. Everyday brings a new issue that you can't possibly prepare for because the disease has a mind of its own. 

Dementia results from physiological changes to the brain. Simply stated, there are physical gaps in the brain tissue that result in mental gaps in those who have it. My mom tells very believable fantastic stories because she's just trying to fill the holes in her memory. They aren't lies, but an attempt to bridge gaps that make no sense. 

My goal in even writing this is two fold. First to process what I've been doing for the last 17 years of my life. I can't believe I've been on this journey for such a long time, nor would I have believed you if you had told me what would be expected of me when I took that first step with my dad. 

But more than that it's to help others who might stumble upon this accounting and find help and encouragement here. You're not alone, my friends. The community to which you belong is a big one. You're often asked how your loved one is, which is such a hard question to answer. The whole truth is just too hard to vocalize, so you just say "relatively, she's doing well". We all know it's not the truth at all, but to tell the truth is just too hard. It's too big.

Rarely are you asked how YOU are. But those of us on this journey understand. We know how you are, because we know what is expected of you and we're right there with you.

Nothing could have prepared you for what you're experiencing right now. But the God Who created you laid this path before you because He knew it's what you needed. His intent is for us to honor others and that looks different in every family. 

Honoring someone is in part, providing the support they need when and in the way they need it. It includes doing hard things. Sometimes feeding them like babies, changing diapers, and cleaning up messes you didn't think you could ever deal with. Yet God gives you the grace when the time comes. Sometimes it's handling their finances like my sweet husband does for my mom. But for you, right now, honoring your loved ones, whether they are parents or others, is doing exactly what you're doing, and doing it excellently. 

Watching over those that can't watch over themselves. Doing the hard things that they can't do for themselves. That, my friends, is a noble calling. 

Don't be discouraged. You're doing a good thing. 

And so my journey continues. It's a bit different everyday, yet stays very much the same. I don't know what my future holds, but my God does. And He never fails. 

Beloved, if God so loved us, 

we also ought to love one another.

1 John 4:11

Honor your father and mother; 

and you shall love your neighbor as yourself.

Matthew 19:9

So that we can confidently say, 

"the Lord is my helper. I will not be afraid."

Hebrews 13:6

Just as I have been with Moses, I will be with you. 

I will not fail you or forsake you.

Joshua 1:5

Other projects

A Healthy Diet

My brothers and I were probably some of the luckiest kids in the world growing up. Mom didn't like anything fresh. Even though we lived in Southern California, we never had fresh fruit or vegetables, fruit juice or much of anything else of redeeming value. In fact, even though the house I grew up in was surrounded by orange groves, I never peeled an orange and ate it until after I had married and been transferred out of California. 

Mom grew up in Kansas until she was in high school, and she was kind of a product of her upbringing. Her mom like weird food and handing out some kind of wonder pills that used atomic energy to clean out ones intestines. Meal times with gramma were always interesting. So, in many ways, my mom did her best to be totally different from her own mom, and when you couple that with her extremely picky palate, and a hatred of any domestic tasks, our own diets were interesting too. Boxed and canned were the way to go. 

We actually grew up eating spam and canned peas, a lot of slightly burned things, because she liked them crunchy, and a semi truck load of Hamburger Helper. We never complained. It was quick, easy and dependable, and mom didn't mind doing it. Dad drew the line at T.V. dinners, so it was all good.

The best part of our kitchen, though, is that mom could be counted on for fun food. She liked chocolate and soft drinks. So, guess what WE got!! That's right! There was always desert. Always. And I'm very thankful none of us ever struggled with weight. Breakfast was usually the best. Dad often walked to Winchell's Donuts around the corner on the weekends. They were so good and such a treat! And the rest of the week, mom could be counted on to provide sugar cereal. All the biggies: Trix, my personal favorite, Cocoa Puffs, Cocoa Krispies, Sugar Pops which we counted as a vegetable, and Apple Jacks. That's right. That was our fruit. Are you noticing a trend? Processed, filled with sugar and preservatives, and we all turned out fine. Perhaps we should re-think our views on food.

But the one food that could be counted on to create dissension was Lucky Charms. "Frosted Lucky Charms, they're magically delicious!" Yeah, now the tune is stuck in your head too, right? The only problem with Lucky Charms was that one of my brothers would usually get to the box, eat all the marshmallow pieces and then leave the oat-y part behind. Any time you heard "Dang-it!!" coming from the direction of the kitchen, you KNEW someone had opened the Lucky Charms, only to find they had been beaten to the box, and all that was left could be considered almost healthy. And when they started putting that rainbow shape in the mix, the insult was doubly harsh.

Our family still appreciates a good dose of morning sugar on a regular basis. But I don't buy Lucky Charms. It's just not worth that sense of loss when the oats outlast the marshmallows.

Yet He commanded the clouds above

And opened the doors of heaven;

He rained down manna upon them to eat

And gave them food from heaven. 

Man did eat the bread of angels;

He sent them food in abundance.

Ps. 78:23-25

My Grandmother Called it "St. Vidas Dance"

My mom and I are very different. In fact, sometimes, I wondered where I came from. My brother, Ming, didn't help with that quandary either, because he assured me I wasn't normal and had questionable roots. There was a time that I truly believed everything Ming told me. He said that if the skin under your fingernails peeled, it meant that you had leprosy. I actually believed it into adulthood, and was always secretly thankful that my leprosy never progressed beyond peeling fingers. Until one day when I looked it up. 

He also assured me that he could teach me how to breathe underwater. He would demonstrate how easy it was, and I would see lots of bubbles popping on the surface of the water. When he came up, he was just fine and encouraged me to go under and take a nice big breath. Of course, I came up coughing and sputtering. I couldn't understand why I wasn't unable to figure it out when it was so easy for him!! 

Perhaps I was just simple minded. I think Ming came by those kinds of stories naturally. My dad told me a few things that I believed wholeheartedly too. And for entirely too long. Nothing malicious, just mischievous. I'm such a lemming.

Anyway, like I said, my mom and I are very different. I think she would have been very happy to dress up every day and take her briefcase to work. She really always wanted a career, and even to this day, when asked what she did when she was younger, she responds that she worked in a bank. Which she did, for a very short time before I was born. Actually, she was pretty much a full time mom. Interesting how we all choose things in our lives that define us.

But I never wanted a career. In fact, I never aspired to work outside the home. I just wanted to get married and have lots of children. I wanted to be a keeper at home and love my husband, and raise cool little dudes and dudettes. God, in His grace, gave me 2 grandmothers that were pretty good with domestic things, so they introduced me to sewing and a few home arts. I took the little bit they showed me when I was very young and went on to teach myself how to sew, and I do pretty well with it. But the problem is, no one was around to teach me how to cook or clean. As a result, my dear husband got to weather the "learning years" when I turned out things like "gravy", that was made from a package mix and was clear with little brown pebble like things in it. Not pretty. When he said "you don't need to make that again" I knew I hadn't been too successful. 

My biggest learning experiences came at the expense of my parents home, for it was there that I learned to clean. Mom wasn't too particular about the condition of the house, but I had a bent to keep things clean and orderly. I thought of myself as being very helpful. In truth, I'm a tad on the hyperactive side and don't sit still well.  So when there is nothing to do, I'll find something. My grandmother identified my inability to be still early on and often accused me of having "St. Vidas Dance". I don't know what that is, exactly, but I'm glad it's not terminal. Now, I tend to put my hands to things that I won't destroy, .........usually.......... but that wasn't always the case.

One day, I decided that mom's refrigerator needed to be cleaned. So, I emptied it out and thoroughly washed the inside. Then I went on to tackle the outside. It was in the days of earth toned appliances, and she was so proud of her new brown fridge with the freezer on the bottom. It was obvious that the outside had lots of fingerprints and scunge on it from the 3 of us kids. But when it wouldn't come off, I took a steel wool pad to it, and that did the trick. Kind of......

What I didn't know was that the paint was SUPPOSED to be darker around the edges of the door. ............um, oops. I also decided to clean the oven for her. So, to make it easier to reach inside to clean it, I pulled the door off. You can do that with some ovens and easily put it back on. Yeah. Not hers. My poor patient father labored for a couple of hours to get that thing back on. He was actually sweating and breathing hard when it finally snapped back into place. I also mixed all the sugar in the sugar canister with the flour in the flour canister, and put it back just as if it had never been touched. It went unnoticed until dad went to make coffee. My response? "I was helping!" I said that a lot. Usually when the parentals were bailing me out of the situation my 'helpfulness' had created. 

Some things never change, and often my husband has to bail me out to this very day. My delusions of grandeur cause me to take on projects that I can't always accomplish on my own. He shows the same patience as my father, thankfully. He survived my learning to cook. Maybe he thinks that if he sticks around long enough, I'll outgrow my inability to sit still too. 

Older women likewise are to be reverent 

in their behavior,

not malicious gossips nor enslaved to much wine,

teaching what is good, 

so that they may encourage the young women

to love their husbands,

to love their children,

to be sensible, pure, keepers at home,

kind, being subject to their own husbands,

so that the word of God

will not be dishonored.

Titus 2:3-5

The Challenge

I grew up in a fairly traditional home where dad went to work, and mom stayed home and did stuff. My mom wasn't terribly interested in the domestic part of "stuff" but managed to keep the family running. She would have preferred a career to staying home and raising us, but was quick to say that she was really thankful  we had all come along when we did. I was usually cleaning her kitchen when she made statements like that, so perhaps that was the impetus for her flashes of insight.

Anyway, one of her weekly tasks was to do the grocery shopping. She never made a list and the results were random buys and several trips to the store in addition to the big weekly trips. It was a common occurrence for one of us kids to be sent to the store around the corner to get whatever she had forgotten. If we wanted dinner, we happily did it, because the meal was usually on hold until we came back with the missing ingredient. 

It was always an interesting process to unload the groceries from the Rambler, carry them into the kitchen and begin to unpack the bags to put things away. Somehow, my older brother, Ming, managed to be on the kitchen side of the table and was responsible for the "putting things away" part. It always amazed me how much came out of the bags and how little actually made it to the cabinets when he put himself in that position. He liked to eat, and was smart enough to put himself front and center with easy access to the good stuff. 

We didn't really care about sugar in food then; or preservatives, or artificial sweeteners. Quite honestly, our favorite foods were packed full of those things. Mom kept bottles of Diet Rite cola in the refrigerator and I remember it leaving a funny aftertaste, but we drank it anyway. She was good at making an effort to keep some kind of treats in the kitchen. There was always something for dessert as long as Ming didn't get to it first.

His penchant for devouring whatever passed by him pushed mom into taking some drastic measures when it came to food. She knew that if she was ever going to get any of the good stuff, she was going to have to resort to hiding it. 

Her favorite food was Hostess Ding Dongs, and we never saw them actually come into the house, but she managed to come up with one at night for dessert. She hid them all over the house. I remember finding them quite by accident in the liquor cabinet. I never drank, because that stuff was nasty, but I thought the bottles were pretty cool looking so every once in awhile, I'd open the buffet in the dining room just to look at them. Some of the bottles had clear glass caps that also held liquid, so that if you turned the bottle over, it would fill the cap. And when you turned it back the right way, bubbles would go up into the cap as the liquid drained back into the bottle. I was so easy to amuse.

My friend, Mona, introduced me to Ding Dongs. I remember her mom gave me one after lunch one day, and I loved it so much, she actually pulled out another one and handed it to me. I loved her, and I think I was a continual source of amusement to her. Things that her own daughter would take for granted would send me into fits of enjoyment and gratitude. Like I said, I was easy to amuse.

When I opened the liquor cabinet, and saw the box of Ding Dongs, I counted myself truly blessed and grabbed a couple to devour immediately. I wasn't about to tell the brothers where I found them either. But I think mom kept a count because the next time I got in there to snag one (or three) they were no longer there. 

It became a challenge for us kids to find what she'd hidden. And it became a continual frustration to her when we found her stash and promptly ate it. Ming and Bunns went ahead and consumed the treasure when fate led them to it, but I was always careful to leave one in the box because I figured if I did that, she wouldn't notice that I had gotten in there. Not only was I easy to amuse, but evidently, I wasn't very smart either. 

Keep deception and lies far from me,

Give me neither poverty  nor riches;

Feed me with the food that is my portion,

That I not be full and deny You and say, 

"Who is the Lord?"

Or that I not be in want and steal,

And profane the name of my God.

Prov. 30:8-9

Foot Prints

I grew up in a mid-century tract house, in a middle class neighborhood in southern California. The house looked like most of the other houses in the plan; boxy and on a small lot. When they were built, I think fences were a part of the package, and as they aged, most of the wood basket weave fences were replaced by block walls, and changes were made so that each house became more and more distinguishable from it's neighbor. 

When I was 6, my little brother joined the family, and shortly thereafter it was decided that eventually we would have to add on to the house because we would really need the extra room. I. WAS. ALL. FOR. IT. When little brother, Bunns, started using a crib, my folks, in their infinite wisdom, decided that he should share a room with me. I don't  know why I was the lucky one. Probably because he was closer in age to me than to older brother, Ming. 

And so, I spent a couple of years being awakened each morning by a glass baby bottle to the head. It was before anything made from plastic was common, and pretty much all that was available were glass bottles with black caps. I saw one of them in an antique store recently. It still had it's original rubber nipple. I think that was a safe assumption because most of the nipple was rotted off and what was left was kind of a crusty sticky mix. 

Anyway, as my little brother aged, and he committed some kind of infraction, mom would just send him to his room. But by then, Ming, and I had learned to tightly close the doors to our rooms when we left for school, because if we didn't, Bunns, would wreak all kinds of havoc in our spaces in the name of "playing." So, when he was sent to "his" room, he entered the back hall to find all doors but the bathroom closed, which left him no place to go. I think that usually hit him harder than actually being disciplined for some wrongdoing. Most days he would re-emerge and tearfully tell mom "I don't have a room!" 

That finally tipped the scales and the time had come to add on the "bonus room" over the garage. We were the first two story house on the block and since it just soared straight up from the ground with no breaks in the walls, it really stuck out in a neighborhood full of ranch style homes. Dad built in some temporary walls upstairs to give my older brother a space up there, and little brother was moved from my room to the room next door. I was once again able to sleep without fear of concussion upon awaking.

After the addition was completed on our house, it needed a new coat of paint. We never hired anything out, because dad could do just about anything he put his hand to. Actually constructing the addition was a little too much job for him, but he did all the finish work inside as well as the painting outside. Mom loved green. She claims it's her favorite color because it's the same color as money. So it was decided that the outside stucco should be painted a mint green with a dark green trim. Most of the houses in the plan were fairly brightly colored, so that combination actually made it blend right in.

I was fascinated with the painting process. Previously, the cottage cheese texture stucco had been white, and now it was a whole new color. I wanted to help so badly but was never handed a paint brush. I managed to remain underfoot for most of the day. Until my bare feet took a wrong step and ended up in the roller tray. Mint green paint splashed up my legs and even covered a fair amount of my fanny. Uh oh. 

Needless to say, I panicked and ran down the sidewalk toward the street. My dad was behind me trying to get me to stop, while my mom just screamed out of frustration at what I had managed to do. I was not the most popular kid in the family at that point. 

Dad managed to catch me, and get me cleaned up, but by the time he was finished, my sweet little green footprints were nice and dry on the cement sidewalk. Latex paint with soap and water clean up was still a thing of the future, so the legacy of my "helpfulness" lasted well into my high school years. Occasionally, I would go out with a scraper or wire brush and try to erase the evidence of my panicked dance down the walk, but not much touched it. 

My hieroglyphics eventually wore away, only to be resurrected in a memory quilt assembled for my parents some time later.  Little brother managed to include them in the square he contributed. Of course. 

But He knows the way I take;

When He has tried me, I shall come forth as gold.

My foot has held fast to His path;

I have kept His way, and not turned aside.

I have not departed from the command of His lips;

I have treasured the words of His mouth 

more than my necessary food.

Job 23:10-12

Our childhood home under construction; with Ming and my dad

Several years later in the backyard

Nicknames

My mom loved unusual names.  I think it was because she wanted exceptional children. She probably knew that we weren't going to be anything extraordinary, but at least our names could be. Mom and dad didn't really agree on what to name the children. Older brother was named after my dad, and he was okay with that, but my name, and my little brothers name kind of came out of left field. Mom loved them because they were so unique.  

In his quiet way dad protested, especially with my name. He called me by my middle name for quite a while. He might not have been able to verbalize it at the time, but I think he knew that my name would be a challenge. I was an unattractive child, with buck teeth, glasses and a speech impediment. Needless to say, I've never loved being the center of attention, and my name is a MOUTH FULL. If I had been thinking, I would have changed it when I turned 18. 

When asked for my name, I usually give "Martha Stewart." It worked well for me when I used it as a laser tag identifier and beat a bunch of teenagers. I must have been channeling my inner felon. But when I called and ordered pizza and gave that name, the kid taking my order actually hung up on me. Uh....... hello?

Anyways, dad was the master of nicknames. His family was always twisting names around, and it continues as the family grows. His sister was named "Sarah", but everyone knew her as "Sally." Dad was always called "Norky", and my mom hated it. He called us kids by nicknames as well. Some were just terms of endearment and it was always kind of a treat to hear him use the same names for our kids that he used with us. 

One of the funniest nicknames my dad ever used was for his boss. Dad was a dental lab tech for an orthodontist named Dr. English. He was a short guy with big hairy arms and sausage like fingers. Dentists didn't use gloves at that time and I'm sure you can imagine what it was like to be a child sitting in his chair. Dad always referred to Dr. English as "Stubby". Stubby seemed okay with it.

My older brother was 10 years old when little brother was born. He was so excited to have a brother instead of another sister. It didn't really matter that they were separated by so many years. Older brother picked up one of his nicknames because little brother couldn't say his name. It always came out "Mingy". So the rest of us began using it as well. "Mingy" became "Ming", which became "Emperor Ming" as he got older.

My little brother was tagged by our cousin, Chris. We vacationed in Mammoth every summer and one year, Chris came with us. Little brother was about 2-ish and loved to run around without his diaper. It was quite a funny sight  and the nickname "Buns" was the obvious choice. We all spell it differently. Mings' spelling of choice is "Bunz", whereas mine is "Bunns". I think Buns himself prefers to ignore the fact that he was even given such a nickname.

We used to just shorten his given name, but it always sounded like we were saying "Grunny". I think little brother should be thankful for "Bunns."

Be kindly affectioned one to another 

with brotherly love;

In honor, preferring one another;

Romans 12:10