Sunday, August 23, 2015

"My mother thanks you. My father thanks you. My sister thanks you. And I thank you."

Does the title of my blog sound familiar?

It should, it's a famous line from the movie, Yankee Doodle Dandy starring James Cagney in 1942. A classic for sure and "my mother thanks you" is recognizable as one of the top 100 movie lines of all time.

There's something magical about movies, isn't there? A great escape from the cares of this world. Something to spur our imaginations. Most of us remember the first movie we ever saw at the drive-in movie or local theatre. We remember lines and words from our favorite move script. We remember the soft, romantic kisses played on screen, and even closed our eyes and dreamed that it was us experiencing them! We remember the name of the date we were with the first time we held hands in the dark. At the mention of popcorn, our minds and senses immediately recall the smell of this buttery, salty snack, as if the bucket were sitting in our lap.

Movie theatres have become something more than "watching a move" in recent years. From a drive-ins of the 50's where you wore your PJs and ate snacks made at home, to an indoor theatre, to comfy theatre chairs, to 3-D and HD to even having your dinner served to you while you watch a movie.

This past Friday, Mother experienced one of these eat-in theatres for the first time. I'm not sure which was more of a surprise to her, an eat-in theatre or a movie about Minions! There's a part of me that thinks she probably understood their incessant, muffled chattering. She absolutely loves animation and the buzzing to and fro of comical cartoon characters (the cartoon channel is currently her favorite TV choice).

To a person with Alzheimer's, new experiences are often daunting, unfamiliar places frightening. Fear easily overcomes their reality. Uncertainty and despair become tag-a-longs. I'm sure that's what Mother might have experienced this past Friday when she and her caregiver embarked on their latest adventure. A simple request such as, "sit down Joan" can be overshadowed by confusion while experiencing too much stimuli. There are some studies that tell us that the patient with Alzheimer's develops tunnel vision, or at a minimum a distorted view of the world around them. Recently Joan has been telling me that the people staring in a TV show actually live and work at her facility! How bizarre is that? I simply shake my head in agreement that I've also seen them walking around the nursing home campus. But I digress...

For now I'm thankful that Mother is still mobile enough to take a couple of outings each month. And, I'm thankful for something else - my own ability to explore and see things through fresh eyes. There's always the fear that I too, may develop this awful disease. Research is inconclusive that it's hereditary, and I'm certainly not at a point in my life where I want to know if my DNA pre-disposes me to Alzheimer's.

In the meanwhile I'm thankful for safe nursing home facilities, Joan's private caregiver, the staff who daily care for my mother, my friends and co-workers who love me in spite of my bad days, a wonderful job that allows me a productive diversion, a husband who always has my sanity and best interests in mind, a church that hugs me and prays for me, but most of all a God who slathers me and lavishes me with more love and grace than I deserve.

Today I am grateful. My mother thanks you. My father thanks you. My sister thanks you and most of all I thank you for all you have done to make this journey more bearable for all of us.

Thank you all!

Saturday, August 8, 2015

Where Everybody Knows Your Name

Making your way in the world today
Takes everything you've got;
Taking a break from all your worries
Sure would help a lot.
Wouldn't you like to get away?

All those night when you've got no lights,
The check is in the mail;
And your little angel
Hung the cat up by it's tail;
And your third fiancé didn't show;

Sometimes you want to go
Where everybody knows your name,
And they're always glad you came;
You want to be where you can see,
Our troubles are all the same;
You want to be where everybody knows your name.

Roll out of bed, Mr. Coffee's dead;
The morning's looking bright;
And your shrink ran off to Europe,
And didn't even write;
And your husband wants to be a girl;

Be glad there's one place in the world
Where everybody knows your name,
And they're always glad you came;
You want to go where people know,

People are all the same;
You want to go where everybody knows your name.

Where everybody knows your name,
And they're always glad you came;

Where everybody knows your name,
And they're always glad you came;

This past week's visit was much like all of the rest. I found Mother sitting in her chair watching her favorite cartoon network. Her mannerisms were the same, that of gently  and methodically combing her fingers across her forehead and through her hair. That mannerism used to bother me because Joan was always so neat and proper. Doing anything with her hair except perfectly styling it was certainly out of the question. These days though, it's okay with both of us that she finds this stress-release.

I've been told that some of the next signs I'll see as her Alzheimer's progresses, is a frustration on her part to find the words she so desperately wants to articulate. I'm seeing shades of this now, but for the most part, her conversations are still intelligible.

Tonight's conversations were similar to the ones from my last few visit. "I look out the window every day to see if I can see your red car." "The people here are really nice to me." "I like the food, but I'm always full." "They forgot to get my laundry." "Can you fix my candle? It isn't working." I like the man who cleans my room. He found my earring." "How are Braxtyn and Gavin? I bet they are getting big now." all time favorite...... "Everybody here knows my name."

We all love recognition, don't we? A hearty hand shake, a kiss on the check, a tip of the hat acknowledging that we exist. That we are important. That we serve a purpose. Well then, I guess it's no different for Mother either. The most important thing to her is that everybody knows her name. That she matters. That someone cares.

As a care partner or advocate for those who depend on us, it's easy to get caught up in the 'what about me' syndrome. We spend countless hours caring for, worrying about, and advocating for the person who's been placed under our care-radar. We grow weary, frustrated and right out exhausted carrying this burden. We desperately want someone, anyone, to acknowledge how heavy the load is that we carry. But, what about the person we care for? How often do we take the time to deflect from our own struggles and show one ounce of empathy or compassion for their struggles?

Oh, so embarrassed to admit, that for me, it's not often enough. But, for a moment tonight, I listen to Mother whose life has a beautiful purpose, still reminding me that it's not all about me and that she loves being at a place where the troubles are all the same ,and Everybody Knows Your Name.


Friday, July 24, 2015

I Scream, You Scream, We All Scream for Ice Cream

Today Mother went out for her bi-weekly field trip, escorted by her private caregiver, Donna. The plan was for a quiet ride to enjoy summer foliage and an ice cream treat at Graeters. "What flavor would you like Joan? You can have any one of the flavors shown in the cases here." "I'll have chocolate," she replied. So a bowl of rich chocolate ice cream it was. Like a school-girl, Mother enjoyed her iced dessert. Loud and soft 'mmmms' could be heard in-between forced lip smacks. A lovely treat, for a lovely lady, on a beautiful summer's day.

On the trip away from Graeters, Mother began to recognize landmarks and streets that she had traveled before. Bethel Rd. was one of the paths she drove in her beloved Saturn Ion only three or four years prior. Mother's mood noticeably began to change. She asked when she was going home. She said that if she had a car, she could drive and buy her own ice cream. Donna could not give her the answers Mother wanted to hear, so she crossed her arms in angered silence as her caregiver continued to drive her back to her now permanent home at Darby Glenn.

Oh, the mood swings that Alzheimer's brings along with all of its other ugly aspects. In 90 short minutes Mother's mood had gone from content, to happy, to anger, to confusion. "No one told me that I can never go home again. Someone should have told me." Silence followed the rest of her time on the road, her jaw set. "We're here," said her caregiver, to which Mother replied, "You mean I have to live HERE the rest of my life?!" "Yes, Joan you do," her caregiver firmly, but sweetly explained to her.

Walking into Mother's facility, the sound of music clearly rang out from the Activities Center. "I like that music," Mother said, as she swayed down the hall toward the strumming of the guitar. Mother's caregiver helped her find a seat at the mini-concert, gave her a quick peck on the cheek, and walked back to her vehicle, putting the raps on yet another Friday field trip.

Like melting ice cream, Alzheimer's patients, caregivers, family members, researchers, and the medical professionals shiver at the prospects of the future around this fatal disease. Right now, there is no cure, there is no way to prevent Alzheimer's, and there's no effective treatment. So we all continue to wait out in the cold, looking at all of the flavors of questions standing before us, case by case, by case waiting for someone to take our order.

Saturday, July 18, 2015

Who Stole My Blue Shoes?!!!!!!

I recently received a call from Joan's care center. Alex the receptionist has become adept at knowing my mothers quirks. This time however, she had him stumped. He started his conversation with me by saying that he had Joan at his desk and that she was worried that someone had stolen her blue shoes. Puzzled I replied that she owns four pairs of shoes, a pair of white and a pair of black tennis shoes, a pair of leopard slippers and a dress pair of Mary Jane like shoes, but no blue shoes. Alex agreed and asked me to talk to Joan to get more clues, so together we could figure out what blue shoes she was talking about.

Alzheimer's steals so many things from the person suffering from its random hits. One day the suffering person knows the name of every pet they've ever owned and another day, they can't remember the name of their best friend of the past 40 years. First it steals the memory, then dignity, then eventually life itself. A thief with a name everyone knows, but tactics and strategy that no one can anticipate. It steals our word power, then moves on to the big ticket items like taste and smell, and then ultimately removes from us our priceless memories.

After chatting with Mother for a few minutes, she frustratingly gave me the following clues:
  1. You know my little blue shoes!
  2. They go with me when I walk!
  3. On the floor!
  4. Larry made then!
  5. They aren't there!
  6. Oh! You know!
Then the aha! moment struck me...she's talking about the plastic skis on the base of her walker that are shaped in the form of little blue converse shoes. Larry bought them for her from the local medical supply store, knowing full well that folks would comment on how cute they are (thus stroking Mother's need for flattery.)  Somehow/someway they were no longer a part of her walker, which launched a second mystery that needed solving. I assured Mother that we would find her blue shoes and asked her to hand the phone back to the receptionist so we could begin the search.

It didn't take Alex and me long to realize that the therapy staff at Darby Glenn had removed them from her walker. You see, Mother walks around the facility all day every day. In the good weather she ventures outdoors onto the concrete patio, moving back and forth for hours. The skies on her walker had become nubs, causing the staff great concern that she might catch them on a transition strip found in every doorway, or catch on the carpet and become a fall hazard.

Wait, there is more. As Paul Harvey used to say, "The Rest of the Story." A quick chat with the physical therapist revealed that they had removed the shoes and replaced them with a newly engineered plastic ski that resists even a jack-hammer tearing it apart. They quickly realized that Joan was extremely unhappy about her blue shoes being removed. She walked in and out of the therapy room (on and off all day long) muttering, "someone stole my blue shoes." Alzheimer's patients often get stuck on one thing and repeat it over and over like a broken record. (I know because as a caregiver, it's one of the most frustrating indicators of this disease.)

But alas, a quick thinking and compassionate therapist came up with a plan - he drilled a hole in the blue shoe ski, affixed it with a screw on to the new non-destructive ski and re-attached it all to her walker. Final result? The new ski is in its proper place and allows for her safety, but when Joan looks down at the floor she sees only her blue shoes that Larry made for her. A win/win for all of us!

Thursday, July 2, 2015

Butterflies are Free to Fly

About this time last year, Mother wandered into a vendor's fair being held by her nursing home. Sounds innocent enough, but the vendor was not there for the clients living at the home, but was there for the nursing home staff, i.e. nurses, aides, other helpers. The vendor was selling medical "scrubs".

One thing you must know about my mom is her history of shopping. If it was for sale, and her eye caught it, that thing, whatever it was, began its journey traveling home with Joan, in the name-brand department store bag to become a part of her personal collection. The day the vendors came to town, was no different. Walking past the display room, her eagle eye caught a black scrub, adorned with colorful butterflies, in her size. She wanted it for her own. The only problem was that the financial director at the nursing home holds her petty cash, and I had put a $20 limit on her daily spending (suffice it to say, my mother was capable of spending ten-times that amount whenever she ventured into a boutique or shopping mall.)

I received a call from the home's finance lady, telling me that Mother wanted to buy the scrub, but it was over her daily spending limit. I asked the accountant if Mother was holding the item in question. She said yes, and that she was not about to put it back on the table. With a grin on my lips, I agreed to Joan's daily cash overage - what else does she have to spend her money on these days?

This scrub has become so precious to her, that one morning when she could not find the shirt in her closet, she marched straight to the laundry room, knocked on the door and demanded from the laundress, "where is my butterfly shirt?", because they had kept it for more than 24 hours! (obviously an unrealistic request, since there are 100 residents in the nursing home who also have their clothes cleaned by the same staff member) <sarcasm added here>.

Somehow the purchase of the butterfly scrub was fortuitous. It came in mighty handy a couple of weeks ago, when Donna, her private caregiver took her to our local conservatory to see the butterfly exhibit. Mother loves flowers, gardens, waterfalls, exotic plants and especially butterflies. Our conservatory has all of this and more. And, guess what? She wore her butterfly scrub.

Still confusing to me is Joan's ability to pick out an outfit that fits the occasion. She's lost the ability to reason, recognize dates, and identify foods as Alzheimer's disease continues to ravage her mind. But, one thing she has not lost is the ability to pull it all together: the right outfit + the right venue = a priceless combination for Joan!

Our own lives are a lot like the lifecycle of a butterfly. For butterflies there are 4 stages:
  1. Stage One - the egg (inside our mother's womb)
  2. Stage Two - the caterpillar (now outside of our mother's womb, growing fast)
  3. Stage Three - chrysalis (inside the chrysalis, there is revolutionary change)
  4. Stage Four - butterfly (we earn our wings and learn to fly forever)
Elton John made famous the song, Someone Saved My Life Tonight. Some of the words are as follows:

Sweet freedom whispered in my ear
You're a butterfly
And butterflies are free to fly
Fly away, high away, bye bye

One day we will all earn our wings and fly away, high away into the arms of our Heavenly Father. Right now though, I'll continue to grow and change (sometimes revolutionary, sometimes not so much) and do the things that bring joy and encouragement to others in this life. Yes, even saying yes to a few extra dollars so that Mother can buy her precious butterfly shirt will be among my thoughtful deeds.

Saturday, June 6, 2015

Recess, or Something Like That

Mom complains a lot about never getting to leave the nursing home during every one of my visits. I'm not exactly sure what she means, because the Activities director at her facility, provides opportunities for the residents to travel to restaurants, the bowling alley and even the occasional trip to Wal-Mart to shop.

So once again I crawl into the mind of someone with Alzheimer's Disease and try my best to understand what my fragile mom might really be trying to tell me. For the past year she's been living at the nursing home and has not been back to our home. She left our house (thinking she would return), was hospitalized with dehydration, sent to skilled nursing facility to recover, and then on to her current domicile. During all of that time I've not taken Joan out of the nursing home - no visits to home or other places she enjoys because our car is simply too difficult for her to get in and out of. And, her social worker fears that it will be difficult to get her to go back to the nursing home if she come home, even for a visit (since she has penchant for wandering).

So, I came up with the idea that perhaps I could pay someone to provide field trip outings for Joan. It's the best and brightest idea I've had in quite a while. Before Joan went into the hospital, her early morning care was provided to her by the most wonderful caregiver in the whole world by the name of Donna! Donna took care of Mother for the 18 months prior to being hospitalized. She came to our house every morning from 7:00am - 9:00am, faithfully getting Mother ready for her day at the National Church Residence Day Care Center. This freed me up to get ready for work and arrive a bit less stressed than I arrived during the previous two years (this includes Larry who also handled a "lion's share" of responsibility for Mom.)

What can I say about Donna so you might understand how important she's been to our family:
  • She provided a service to us worth much more than the salary she was provided with
  • She was dependable and tidy and never missed a beat making Joan's bed, cooking breakfast and cleaning up afterwards
  • She put up with a lot from my mom every morning, including enduring multiple wardrobe changes (often snatching things and putting them back into the closet when Joan's back was turned or she was showering so she was limited to one choice)
  • She helped Joan with accessorizing, including putting on Joan's earrings, bracelets and necklaces
  • She was kind and generous (almost to a fault) to Joan (don't think I didn't see all of those bracelets, etc. that you hand-made for my mother so she would have a red accessory to wear with her red outfit!)
  • She became Joan's best friend and advocate - I could often hear the two of them laughing out-loud
  • She is/was intuitive to Joan's health needs
  • Her presence allowed Larry and I lead a normal life from 7-9 a.m.
  • She became a part of the fabric of our family
  • What's not to love?
After careful consideration of recent "next steps" for Mother, it only made sense to hire her to be the one to take Joan on her occasional "private" field trips. Just Joan and Donna, with attention 100% on Joan. The first trip was to get ice cream, the second trip to Wendy's for their strawberry/spinach salad and a large lemonade.

I can't worry or wonder if Joan will remember her field-trips (which she probably won't after a day or a week), but what I can be assured of is that she is safe with Donna and that the time they have together will bring my mother joy during those hours.

Please stop thinking that you have to do it all for your family member with Alzheimer's; please, please give yourself a break whenever possible; please look for help outside of yourself; and please consider the person you are caregiver/advocate for. There are things they still enjoy doing. Be creative, think hard, and provide experiences and opportunities for your loved one to enjoy daily life, no matter their boundaries or constraints.

Does mom still complain about being cooped up - you guessed it, the answer is yes. But, am I doing my best to provide opportunities for her to get out and about - YOU BETCHA! As long as my mother still has the ability to do so, I want her to get up and get out! And, that my friends, brings me a great deal of satisfaction!

Sunday, May 31, 2015

The Longing of Her Heart

Proverbs 13:12 (NIV) – “Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.”
Those who know me know that I work hard to model my life after the (Holy) Scriptures. Those who don’t know me, if you follow my posts long enough, you’ll soon learn that about me <smile> Today’s post is centered on my opening words from the Bible.

I’ve fretted over the past few months every time I visit with mom. For over six months now, we’ve had the same conversation. This past week was no different. As I walked into her room, there was evidence once again that she was hoping to go home. Family portraits were stacked neatly on her dresser top. Clothing was stacked in a pile on her bed. She had removed from her walls the precious pictures made by budding artists, aka her great-grandchildren.
She was at dinner when I entered her room. My countenance fell as I was struck once again by the reality that mom wanted to go home, and I had to be the bad-guy who would once again tell her that ‘this is your new home’ (at the Nursing Home). Silently, I played the script in my head. Mom starts with, “I’m so glad I’m going home today.” Me, with great caution, “No, you are already home.” Joan (mom) shouts, “what? I don’t want to live here, why can’t I go home?” Me (Cindy) gently, “Because it isn’t safe for you there anymore.” Joan groaning defensively, “But, I can walk, I can talk, I can do everything by myself.” Cindy sadly, “I know you can and I’m so proud of you!”

Often over the past few weeks, I’ve wondered why this conversation wounds me so. Then it stuck me. Even with Alzheimer’s, there’s a hope deep within Mother’s spirit that she will once again be able to do the things she once did - that she will gather around our home table for a meal, at which she will be normal and whole again.
I can’t fulfill the longing of her heart. I feel so helpless. But, we serve a God who knows our needs, both mine and Joan’s. He cares for us like no earthly being can. He gives us ideas to help those we love, even when we are hopeless.

In my next post, I’ll share the idea I’ve stumbled upon. It’s not “home”, but it’s a chance for mom to feel somewhat normal and keep all of us from drowning in “hope deferred.” Stay tuned…

Tuesday, May 5, 2015

Caregiver Burn Out (it's real)

As a child, we were often warned not to get too close to the fire or it would burn us. Our mothers shouted, "DON'T TOUCH THAT STOVE, or you will burn yourself!" The funny thing is, many of us continued to get closer to the campfire and/or the stove just to see what it would be like. What we found was that fire really is hot and it really does burn, especially our hands, feet or other extremities that we place near it.

When I was 10, I decided it would be a good idea to light a match and then douse it by dropping it into a glass full of gasoline. What was even worse was that I was doing this on the workbench in the garage. The same garage our family car was parked in. When my mother found out what I was doing, she ran out, grabbed a 2x4 and didn't know whether to hit me or the flames! The fire somehow went out before there was severe damage to the garage, me or the car. My guardian angel was certainly looking out for me that day!

Some of us still don't learn our lesson, even when we're in our 50's and 60's. This "sandwich generation" of ours doesn't have a manual or process for being a caregiver, so we do it all. We take care of our houses, our jobs, our husbands, our children, our elderly parents and now even our grandchildren. We're living longer because of terrific medical care, and working harder for fear we will run out of money before we die. We lend money to our kids because they are in a tight spot. Many times we give our parents money to help pay their medical bills and prescriptions. STOP, DON'T TOUCH THAT FIRE!

Eventually, we find ourselves at the bottom of the totem pole, holding the world on our shoulders. Why? Who told us we have to do this? Who told us it is our responsibility to care for everyone else? We can't keep going this way spending time and money and emotion as though it were endless. We need to step back from the fire before we get burned. We need to take care of ourselves before we reach a boiling point and explode. We need to stop throwing grease into the hot skillet, and turn down the dials on this pressure cooker we call our lives.

Caregiver Burn Out is real. How do I know? Because I've experienced it. Somewhere, somehow along the way, I lost my way and over-extended caring for my loved one. With the help of my husband, a fantastic counselor, my work and church community, I learned I had reached my own boiling point. I was fried and crispy like a KFC chicken leg. I was good for nothing or no one, not even myself.

Before you reach your boiling point, listen to those around you. They are your red flag, your fire extinguisher. Don't keep looking in the other direction for the fire hose. You've already been hit by it, and you don't even know it. Ask for professional help for yourself and your loved ones in need. Take the hand that is reaching out to you, and thank God that there are people in your life who truly care about you

Step back from the fire before you get burned. You can't dodge the flames forever if you keep standing too close. Reach for the one (God) who promises you won't get burned if you trust in Him.

Isaiah 43:2New International Version (NIV)

When you pass through the waters,
    I will be with you;
and when you pass through the rivers,
    they will not sweep over you.
When you walk through the fire,
    you will not be burned;
    the flames will not set you ablaze.

Monday, April 13, 2015

The Sun Goddess Confronts Sundowning

All I needed to do was Google Sundowners in order to find exactly what I was looking for.

Do you find yourself Googling to identify a disease to go along with your symptoms? For example, when you have a fever of 102, chills and no appetite, do you surmise that you're coming down with a bad case of the flu? Do you believe everything you're reading on the internet? If we take a step back and allow ourselves to read a bit further, we may also find that a fever, chills and no appetite might apply to at least 40 or 50 other conditions and diseases! Crazy isn't it that we continue to stick to our own conclusions until a medical professional either validates or blows apart our precious theory?

I reacted the same way when it came to my mom's Alzheimer's diagnosis, until I could no longer fight what the professionals were saying. I was seeing the symptoms, and the changes I saw were much more than a fever and chills. What about Alzheimer's disease? Its symptoms and descriptive behaviors are as numerous as the folks suffering from this awful disease. No wonder we caregivers and advocates live in the land of confusion as we try desperately to pick apart the evidence staring us face on. One moment we hope, and the next moment our hopes are dashed.

Recently, Mother's moods were running from high to low and back again, all in a matter of hours. I wondered what was causing this when a friend shared with me that she might be sun downing. I smiled, thinking, oh, how appropriate for someone who's spent her entire adult life as a sun-worshipper.

I reached into the symptoms of sundowning, also known as Sundowner's Syndrome. It seems to occur in the late afternoon or early evening and, according to the Sundowner's Facts website, and can include increased confusion, disorientation, agitation, anger, depression, restlessness, paranoia and rapid mood changes. Well, I declare! That certainly explained the swing in my mother's recent moods. The symptoms are often more severe and pronounced, and almost always worsen as the sun goes down and natural daylight fades.

People pay big money to have a tan like Joan!
Mother has always hated the winter and usually isn't comfortable when the sun goes down. As the seemingly long winter of 2014/15 drags along, so does Mother's restlessness. New, bad behaviors arise such as temper tantrums, or not using her indoor voice to proclaim, "I want to go home" and at meal times shouting, "I didn't order this food" (when actually the staff brought her exactly what she ordered).
Last summer I received a call from her care center. They were concerned that Mother was spending too much time in the court yard sunning herself. They asked me if they should bring her inside or put some sun-screen on her. I replied that she had spent every waking minute on sunny days for the past 70 years sun tanning and never using sunscreen! No need to change anything now.

Personally, I can't wait until daylight ebbs longer and the sunlight gets warmer. I can't even imagine how much the "sun goddess" inside of Joan longs to thrive again. I'm convinced that spring and summer is exactly what the doctor would order for Sundowning, if only he could write a prescription for it.

Short, but Sweet

My momma always said, "Life was like a box of chocolates. You never know what you're gonna get." ~ Forrest Gump

This morning, I woke up startled from a nightmare/dream that seemed so very real. Mother was standing beside my bed offering me a piece of her favorite chocolate, pecan turtles. She was loving and kind and when I asked her why she wasn’t at her care facility, she sweetly told me that she had just walked out the front door, took a ride with a nice man, stole a box of her favorite chocolates from the local grocery store, and then walked to my house.
As I cleared the cobwebs from my foggy brain, I wasn’t sure whether to be horrified or delighted at what I had just experienced! (or dreamed I'd just experienced!)

Our minds are a funny thing, even for those of us who are not living daily with the confusion of Alzheimer’s. We Advocates and Caregivers never truly rest, our loved ones always on our minds. We toss and turn with the ravages of this disease. We too seek respite from the wake of its devastation.
Maybe it was a dream or some wishful thinking that manifested itself into a dream. But, for now, I can smile, remembering that mother’s favorite chocolates are what she would offer me if she were to walk through my back door, into my bedroom, and reach down lovingly to offer me a piece while I'm sleeping.

Devil or Angel?

I enjoy watching cartoons that portray someone with a devil (equipped with horn and spiked tail) on their one shoulder, and an angel (adorned in white with shiny halo) on their other shoulder. Maybe that's because today I'm identifying with those cartoon characters (more specifically today, the red one.)

I wish life were as simplistic in message as a cartoon, but life is more complex than that. I have days when I don't want to be near my loved one with AD (pitchfork armed and ready to fire) and other days when it's okay no matter how the visit goes (halo shinning and straight). The thing that stinks most about this disease is that one minute you're riding through rainbows, then suddenly your trajectory rides straight into the dark abyss. Never steady, never predictable, always outside of your control.

Right now the devil is whispering more loudly into my ear. Judge me if you must, but until you can relate to me with your empathy gene, you won't really understand my feelings. And, I don't judge you if you're a bit disappointed in me. My prayer is that you'll never need to experience this disease. My prayer is that there will soon be a cure, and none of us need live this disease or watch those we love suffer from this disease.

There's a popular saying, "hate the sin, not the sinner." Today I'm saying, "hate Alzheimer's, not your loved one."

If you have a loved one with Alzheimer's or other forms of dementia, or have ever experienced the devastation of these diseases, you can relate. I'd love to hear your comments, whether you're feeling good or evil today.

Sunday, April 5, 2015

There's No Place Like Home...There's No Place Like Home

The majority of us are familiar with the Wizard of Oz, that 1939 classic movie where Dorothy and Toto meet the Lion, the Tin Man and the Scarecrow shortly after being ejected from their home during a Kansas tornado. On Dorothy's journey she sees things that are interesting, intriguing and beautiful. On the other hand, she's often met with frightening, dark and ugly creatures. Eventually, she and her new-found friends meander their way down the yellow brick road to meet the Wizard who wasn't really cracked up to be what everyone promised! All Dorothy really wanted was to go home. She'd enjoyed her adventure, but could not wait to be back at home again. She was willing to endure fear and sacrifice anything in order to be home again.

For the past eight weeks, that's the way it's been with Mother. "I just want to go home!" she repeats over and over again, while slamming her fists on her chair or nearby table. Every visit, I leave feeling guilty that I cannot bring her home. What she can't seem to grasp is that we simply don't have the stamina or resources to make sure she receives 24/7 safety and care. The facility where she is now takes very good care of her. At least 15-20 professionals oversee Joan's needs every day. After nearly 10 years of caregiving, it's now an impossible task for Larry and me, being only an army of two.

During a visit this week with Joan and me, her granddaughter and her great-grandchildren, she made her request known to them ("I just want to go home!"). I once again told the little white lie that all family members and care partners tell to their loved one with dementia - "I'm sorry, you can't go home until the doctor says so." At that exact moment she got up, said I'm going to find a doctor, and stormed out of her room. What was I to do? Let her go, that's what. My daughter and I smiled at each other knowing she would never find a doctor to tell her what she wanted to hear. Darn it if she didn't come back to the room with a professional wearing a white lab coat! (Who preceded to tell her she cannot go home, and that she was there for safety reasons).

What is that instinct within us that longs for home? I've read that abused children long to return to the parent who's been abusing them rather than to stay in a foster home. I read more recently that even if we were to take our memory-impaired, loved one to the home they lived in before they went to live at the full-time in a care facility, it would not be the home they are envisioning. More often than not, people with dementia and other forms of memory loss are longing to go to their childhood home, a place where they felt safe and loved 60 or 70 years ago.

Joan really loves her place at Darby Glenn often commenting that everyone here knows me, everyone loves my place, I like the meals, and all of the people here are really nice. Then there are other days when she complains about the food, her laundry and clients who bother her (all of us can identify with Joan on some level here, don't you think? We all have bad days).

Toto, I have a feeling mom knows full good and well that she's not in Kansas anymore, but even if I clicked my ruby red shoes together three times, I still can't make the Alzheimer's go away. Most days I need to seek the Lion for added courage, the Tin Man for a brain to process this all, a Scarecrow who teaches me to not lose heart, and most importantly of all, I need to find the Wizard who will soon discover a cure for this tumultuous disease called Alzheimer's!

Thursday, March 26, 2015

Connecting the Dots

Project managers across Corporate America love using the term "Connecting the Dots". The online slang dictionary defines it as "to figure something out based on multiple pieces of evidence".

Joan Pondering Her Next Move
A couple of nights ago during a visit with Mother, I decided to distract her by engaging her in a game of dominoes. It's funny that I don't remember playing games with her as a child, she never seemed to have the time or desire. However, I've often heard her talk about the bowling alley, playing UNO, stacking dominoes, playing solitaire, Monopoly and other popular card and board games. But, here I sit tonight, with mom, playing dominoes. I suppose it was a good thing for both of us. It allowed me to close some squeaky doors from my past.

Interestingly, as we played, Mother remembered an elementary version of the game, that of connecting the same number of dots and same color of dots to pieces already lined up on the table. She's always been competitive. Looking at the picture on the left, I'm sure you can see just how intent she is on picking just the right domino for her next move. I'm sure we weren't playing by any rules, but neither does Alzheimer's play by any rules.

As she continued the game, her intense focus made me smile. She was able to do what the Electric Company jingle chimes, "One of these things is not like the other."

Distracting my mom these days is becoming more and more difficult. Lately, all she talks about is going home. I gently explain to her (and sometimes not so gently) that where she now lives is her new home. When I say things like that, looks of puzzlement and bewilderment frame her face. She just doesn't connect the dots. And, then the questions come in a line much like the domino game. "Why can't I come home?" "What do you mean I need 24 hour care?" "Do I have to live here the rest of my life?" "I.WANT.TO.GO.HOME!" It doesn't matter how many times I try to explain to mom that she needs 24/7 care, or that the place she now lives is her new apartment, or explaining that you are here because you have Alzheimer's. Each visit I'm faced with the same questions as the times before. My countenance falls and my desire to visit wanes. But, I continue to do the 'right' thing for Mother.

Connecting Dots
To me the most frustrating thing about Alzheimer's is the way it plays havoc with the minds of the patient as well as the primary caregivers and family members. We question our own motives at every juncture. "Am I doing the right thing for my loved one?" "Am I providing the appropriate quality of life?" "Does my loved one really have Alzheimer's?" "What if the diagnosis isn't correct? She seems so 'normal' today." And, on and on and on it goes until our minds begin to question sanity.

Connecting the dots? Where are the multiple pieces of evidence I need for living in the valley of personal confusion? I don't think I'm going to figure that out tonight my friends, but, maybe tomorrow, right after a good night's sleep.

Sunday, March 22, 2015

I'MMMMM BAAAAACK...................

It's been a long time since I last posted something about mom. A few years have passed and many, many things that I could have posted about are now in the past.

In April of last year, she became ill and was hospitalized. In May, she entered skilled nursing and in June we admitted her permanently to a full time nursing facility.

This awful disease called Alzheimer's continues its journey. May days the roads are filled with potholes and some days there is a pot of gold at the end of the rainbow. But, one thing remains certain, the disease has no rhyme or reason. The emotional ups and downs for family members are ever changing.

Mom for now is content. She loves her surroundings, but constantly challenges family and staff with her cries of "I want to come home". It tugs at our heart-strings, it pierces our guilt and taxes our emotional strength. We cannot bring her home for none of us have the strength or stamina any longer to care for her needs 24/7.

I'm glad to report that physically she is as strong as a horse. If we were to put a pedometer on her, we'd probably be reporting a minimum of 10,000 steps a day. That walker of hers get a workout every single day. It's just a shame that her minds is not keeping up with her body, but that's just the way it is. There's really nothing we can do about it until "they" find a cure.

It does not mean that we don't love her - in fact, it means that we love her more. Because, instead of two to three people overseeing her needs, she has an army of dedicated staff to feed, bathe, clean and keep her active day in and day out. I commend the facility where she lives - they are true servants, maybe even close to saints!

I hope to write more soon. Some days will be glimpses of the past few years (to help you all fill in the missing pieces). Writing is cathartic for me. It calms me and keeps my emotions in check. It's the gift God has given to me to get me through the bad and the good times. Thanks friend for walking this journey with me. I value you and your sympathetic and often empathetic eyes.