Here we are, seven years ago, at our youngest daughter's wedding. That's Jerry. Animated! Winsome! There I am, speaking for him, giving the toast. He was always the talkative one. I was the shy one. Boy! How things have changed!
Pictures speak a thousand words. Here's WHY WE VISIT.
TO LOVE
TO GIVE LOVE
TO TEACH LOVE
TO SHARE LOVE
TO KNOW LOVE
Here's the deal with Alzheimer disease. The only thing that is predictable is that it is unpredictable! Once that fact is accepted the emotional roller coaster is less dramatic.
In my last post, I wrote about Jerry's being unresponsive. Actually, the last several visits have been that way. I remember last year the same thing happened. This time last spring, I was calling brain donation centers, organ donor programs, and picking out songs for Jerry's memorial service. That's the way I work.....face things "head on." ..."take the bull by the horns" so to speak.
Then, Jerry rebounded. I was a wreck!
After his last glossy eyed visit, I just had to go see him again. Something was drawing me back. So today, when I drove up in the parking lot, his activity director was just leaving to go home. She greeted me with, "We took Jerry out for pizza today! He ate all his pizza, my french fries, and a huge piece of chocolate cake! We just got back, so I hope he's still alert so you'll have a good visit."
Why was I not surprised! I was delighted! When I walked in, I could see through the windows that he was out in the back yard with Tom, the tool man. Tom calls Jerry, "Colonel Jerry". I call Tom, "Major Tom". They were sitting in the rocking chairs on the back porch. When Jerry saw me, he stood straight up! That was the end of Tom. It was all ME from then on! We had a wonderful visit.
Now, when I say wonderful visit..here's what I mean. We sat...like on your grandmother's front porch..in the good ole summertime. Very little was said..but as the breeze swayed the trees and the sun lit the hanging baskets of pink and white mandevilla, we just rocked....rocked, holding hands. Jerry would pat my leg. Healthy tomato plants were growing in pots on the sidewalk and I talked about tomato sandwiches, black eyed peas and cornbread. We connected. It was perfect and I know he knew who I was.
The visit didn't last long, maybe 45 minutes. I've learned not to expect much. But I was grateful for the 45 minutes. in fact, it was enough. I mean....how long can one talk about black eyed peas and cornbread! After about 45 minutes, Jerry began to look restless..a little fidgety. I knew it was time. Time to move on....(either to the dining room or the potty.) Either or both. Probably both. TIme to summon the aide. Then, they moved on.
I have a dear friend who placed his wife in a facility a few months ago. We talk about how we have to stay busy and not allow ourselves to "think too much". Lest, the "thinking" take us right down the drain of depression. Personally, I usually make a conscious decision never to go within a football field of that drain.
Today, however, I've been thinking. It's not been a bad thing though.
One thing that Alzheimer Disease gives you is time to reflect on the meaning of life, it's purpose, the "why's" , the "what's the point". For Jerry and I, it's been 14 years of pondering. Today was one of those days. I mean, let's face it. From the day we are born we are beginning the process of dying. Probably if we knew that when we were born, we'd prefer not to enter this world at all....I mean....really. Why does life have to get harder than the giggles of toddlerhood? Jerry and I have had an awesome life with faith, family and friends...great parents, a home, travels...we've been very blessed....this is why I am reflecting today.
Once the reality of knowing that "none of us are getting out of this alive" is accepted, we can then try to figure out "why" we are here and "what" our purpose is. For some...they want to feed the poor...help the sick.....then their are those who want to be the next rock star, famous artist or writer, the richest tycoon...and so on. For me.....????
Well. for me, it's to honor to the one who gave me life in the first place.... in all that I do.....thus, love others, bring a smile, share what I know, listen to a crying friend, ...whatever.
As Jerry grows weaker, I see God as even greater. Jerry's response to me is getting less and less, however, today he at least responded when I came in by standing up and coming toward me. I walked him down the hall and into the room where our Monday song fest was about to begin. I sat him down. His stare was straight ahead, eyes wide pools of faded blue...his mouth was droopy with a little bit of "sugar water" drooling down. We held hands with our fingers interlocked and laying in my lap. There was very little expression during the entire hour of singing. No sound from him. No words. I couldn't help but be appreciative of a God who doesn't demand performance but only wants us to love him. I couldn't help but thank Him in this time of significant weakness and look forward with hope in preparation for the last days. The hope of the future is far greater than the desperation. Jerry and I both have been secure in that hope.
Because none of us gets out of this alive.....this life is worth living because of this LIVING HOPE that Jesus provided.
And as the last song was sung....the "silence was broken". The residents began to sing the old hymn Victory in Jesus, My Savior Forever, and I felt movement. I looked down at our hands interlocked. Jerry, who had remained expressionless throughout the hour, moved his thumb. Wrapped across the top of my hand, it began to weakly pulse against my skin. The song had gotten through. From the beginning to the end he knew. His hope is still inside.
The fields of wild flowers are blooming red and purple with poppies of salmon. Such exhilarating fields of happiness!
It's a constant challenge to stay "UP" while journeying through Alzheimer Disease. It's a daily discipline to see the positive and soak in the lovelies of life.
When visiting Jerry today, I peeked my head around the corner into the activity room. The residents were in a circle holding Mexican shakers in an attempt to participate with the visiting accordion player's tunes. Jerry was asleep in his chair with his eyes barely open. From what I understand, Alzheimer patients sleep a lot. Whenever they are able to be alert and participate, that is equivalent to a healthy person taking a final exam. It doesn't take much to completely exhaust them mentally. These days, Jerry is asleep most of the time.
I stood there for a few minutes hoping he would see me. I waved my hands..his eyes opened a bit more. I kept waving bigger and bigger waves. After a few minutes, he began to move. I motioned for him to come toward me. Jerry is a lovey thing, so when he thinks he's going to get a hug, he usually comes. It doesn't matter who is at the end of that path.....he's just coming for a hug. As he came closer, I could see that he didn't know me. His eyes stared blank as I wrapped my arms around him. I looked at the aide, "Awe. He doesn't know me." My tears began to flow.
It's been a while since I've shed tears. Maybe I've stuffed those feelings down deep in order to survive. Maybe I am numb. Maybe I've gotten use to this in my own weird way. Whatever the reason, it was good to get them out. The aide took Jerry and cleaned him up...shaved him, changed his clothes and brought him back out looking all dapper. By now, he was a little bit more alert so we ventured outside for a walk. The more we walked, the more he picked up his pace. I let him lead the way and today he led me straight into the tall grass in the vacant lot next door. Don't know where we were going...but it didn't matter. Tall grass is good.
After a 5 minute walk, we sat on the front porch with all the other residents. I've actually begun to look forward to chatting on the front porch with all these beautiful people. These are the "independent" living residents. They share old stories and gripe about how their kids never come to see them, yet, somehow, find the time to use their beach houses.. We've become "old" friends.
I've noticed that Jerry does not last long now. About 15 minutes was the most he could handle on the porch. I could see he was getting a bit restless and his eyes were beginning to look weary again. So, we shuffled on back to the memory care unit where he smiled (well, sort of). Jerry's smiles are less frequent, by the way. Not that he's grumpy. He's just not aware. BUT, he was aware of his aides...they make him smile. It's all I care about now....is that he smiles....even if just for a moment.
Let's see. Where are those wildflower fields?
Today's visit was a bit comical. (At least it's funny once you're accustomed to Alzheimer world.) We have a new director at Jerry's facility who is trying to spruce up the place. Have you ever tried to paint family room in a memory care unit? You have to be speedy on the job because you CANNOT disrupt their world. Heavens forbid!
Each day, the majority of the residents wander on down to their little family room and spend most of their waking hours there. Unless they are at a planned activity they are usually sitting like a covey of birds...all flocked together. It's their comfort. It's their security. Thus, their "family" room. The room is lined with chairs and sofas along the wall and a TV is turned on to something like Andy Griffith or an old classic movie. If the weather is nice, the back door is open and they can wander outside to their fenced in yard at their leisure where there are planted flowers and a little figure eight sidewalk. The family room is divided into two separate areas: 1, the living room and 2, the putzing around room. (Honestly, most are "putzing around" all the time.) The putzing around room is where tables are set up with children's games. The entrance to the family room is through double french doors that pass by the nurses station.
It's nice to see a new color paint going on. That "institutional" green was getting pretty musty looking and the mellow yellow is going to freshen things up a bit. To paint the area where all these precious people sit (all day,everyday) requires moving the furniture from area 1 to area 2. Then from area 2 to area 1. While area 1 is being painting, they sit in area 2. While area 2 is being painting, they sit in area 1. Are you confused? Well, they are. Seriously, I it is quite discombobulating for them. When I brought Jerry back from our walk, I could see dear Alice crying. Alice is the sweetest and most pleasant person in the unit. To see her cry is pitiful. So, I took her hand, hooked it up to Jerry's, and walked them both down the hall. (Jerry was a bit disturbed at this. Not only to see Alicen cry...but to know that I placed HER hand in HIS. After all, I AM HIS GIRL.)
Anyway, our travels down the hall, didn't do much for Alice. She was able to stop crying, however, teared up again unless I kept her distracted. Then, I saw the cutest thing. Jerry walked over to the french doors that were closed to the family room. He could see through to the inside where the painter was painting some "strange new color" and there was no furniture accept a sofa in the middle of the room. One by one the residents would walk up to the windows of the door and peer inside, as if to say......"someone's in there" "why can't I go in?" I belong in there..." "let me in...let me in."
That must be why Alice was crying. It threw her off...out of her routine....They were all a bit disrupted. All a bit confused. In a way, I suppose you could get all sad about it....thinking it's pitiful. But, dear readers, remember......this is Alzheimer world. Once they get back in their chairs...they will forget all about it. That should be tomorrow.
I had the greatest pleasure, today, of seeing old friends from swim team days. There were many years spent on pool decks, with stop watches in hand, long weekends, and relay races.....all for our daughters. Jovial Dick and Jerry would stand on the sidelines jabbing each other about politics and analyzing current events, all while cheering for our daughters who competed against each other.
As I drove over the bridge to meet he and his wife, I was reminded of how wonderful is is to have friends from "pre" Alzheimer days. Sometimes, I've found that the journey has been so long, that it's hard to remember about our lives in healthy times. They reminded me of how they were in tears, laughing over this funny story that Jerry had told..and, of course, they had to retell the story. I've received letters from little swim girls, who are now grown up, of how they remember "Mr. Jerry" cheering on the side of the pool and one letter from a young girl who remembers Jerry holding her in his arms after a rubber exercise band snapped and tore her retina. Jerry adored those girls.
In the beginning of the alzheimer journey, the emotional, mental and physical demands were overwhelming. The outpouring of empathy and hugs were like a warm blanket of love. But as the honeymoon of concerned friends waned...so did the memories. A new life began....Life with Alzheimers.
So go ahead. Help bring back the memories for the caregiver. Go visit a caregiver. Write them a letter. Remember the funny times..the precious times. Laugh. It's never too late. It might make someone's day.
On Friday, our facility held a cook out as a fundraiser for Alzheimer Research. Usually, the most upbeat visits are when all the residents and their families are together celebrating. Friday was no different.
Our children and grandchildren came to see their Papa J. It had been several months since my son, from Los Angeles, had seen his dad, so we anxiously stood outside the glass doors of the dining room where the Alzheimer patients were having their lunch. The aides cheerfully tapped Jerry on the shoulder to get him pointed our way. The last time he saw Mark, they both embraced with unforgettable sobs of endearment. Sobs were a good thing in that it meant that Jerry still recognized him, which is so important to the loved one. This time as Jerry was led closer to us his look was gazed as he stood, tall and frail, wondering who these people were.
Each one of us, kept smiling, "Hey, Dad." "It's me." "It's Mark." "It's Amanda." until we could get a response of some sort. LIttle McCauley stood thigh high hugging his legs. We took him down the hall to the outside where all the families and staff were feverishly seating their loved ones and serving up burgers and slaw. It was a gloriously clear sunny day, perfect for a day in the "park". It warmed this mama's heart for me to watch my kids serve their dad and gently hold his hands to help him sit. The kids ran out on the grass and were not underfoot, which was good.
No matter what tricks we used, it seemed impossible to get much of a response out of Jerry. The aides have said that this is pretty much the way he is every day now. He's definitely shifted again in his decline. HOWEVER, their was one trick that we hadn't tried. Mark went back inside and brought out a big red rubber ball! As a family, we lifted Jerry out of his chair and walked out onto the grass. Mark said, "Here, dad. Catch!" Not only did Jerry catch it, but he immediately tossed it back! There was a connection! We saw him smile! He'd catch. He'd carry it around. He'd toss it. He'd walk off with it. Friends popped out from inside with smiles as they watched the entertainment. Our cameras were snapping as we tried to capture these moments. Happy moments. Red rubber ball moments. The kind that we scramble for and don't want to forget.
Ok, I admit I've been struggling with a bit of a funk lately. We all do it....don't we?
Today, when visiting Jerry, I was astonished at how he still connects with me. It blows me away. Even though he is quite "lost", his footsteps seem to move faster when he is approaching me. His face (eyes) brighten and his hands still reach out. The meeting never gets old. I guess all that playing together left it's imprint.
After sitting with him for lunch, which is not the most appetizing thing to do, I asked if he was ready to go. As if he had been bitten by a cattle prod he popped up from his chair. I wiped him off, the aide took him to the potty, and then we wandered down the hall to the porch outside. It was a stormy day and it was really nice to watch the trees swirling and the dark clouds rolling in. Then, I realized how funny and bizarre the conversations are at elder care facilities. At first, it was just Jerry and I sitting on the double wicker sofa. Then a gentleman with his cane came to join us. He is from Boston or somewhere up north and has a quick and sharp witted voice. He talks as if he's in front of a sales presentation. He'd say....."It's a lovely day. Raining. Hope it's not wet." Then when another little lady came out, he pointed to the other side of the patio and said..."They are playing craps over there. You may want to join them." She said, "I don't play craps." Then he responded with, "Well. So you probably won't want to join them." Course, there was no crap playing on the other side. There actually were not people on the other side either.
Then, I got to wondering. These people probably are so fine in their own world. They have no idea that the Boston marathon was bombed, nor that there are terrorists on the planet. They are clueless about North Korea or Afganistan. They have no idea of the many stresses in the world. That's why they are so dad gummed healthy! No stress at all. The most stress they have is whether they will get a generous portion of ice cream at lunch or not.
Seriously, Jerry and I sat in silence as I listened (probably Jerry was listening too) to the gentleman and his "crap shooting days." As each little person came out to join us, I captured a part of their existence. And you know what? They actually understood and related to each other. Under all that aging gray matter, there is an instinct that relates.....such understanding and tolerance and lack of judgement about how silly they may sound. Otherwise, nonsense...seems to make sense.
Go figure.
Since I was in such a state of frustration in my last post, I thought I would follow up with a few more comments. First of all, I am not going to go postal....although there are times when I can understand that level of frustration. Second of all, I am not interested in becoming political. Unfortunately, too many people spout out their opinions in a political fashion but really do not know the facts. People seem to be eager to jump on the bandwagon on both sides and believe every slanderous thing about the "other" side. Nope! I"m not going there.
One thing that this Alzheimer journey has taught me is that no one entity can be the answer. Not government, not churches, (yes, I said the "church") not insurance companies, and so on. All of these things are man made organizations that are businesses. They all must have rules and boundaries and budgets. Some are run very poorly and some are run with relatively good success. AND, I definitely do not believe that kindness, generosity and sacrifice can be mandated. So, if it looks like I've lost faith in institutions and politicians.....I HAVE....because their motives are not always pure. From this journey, I've realized that I can depend on NO ONE person or entity. You can, however, buy a painting though. (ha!)
Here's what's positive! What I have discovered is the delight in seeing how God moves in the hearts of men (those who believe and those who don't). People who you would least expect. People who were chosen by God to meet a need. I've seen His provision on a day to day basis and often kick myself when I waste my time in angst. From the friend who essentially rebuilt my retaining wall with his bare hands (and an excavator), to the latest act of kindness. ...a surprise of utmost thoughtfulness...when I was handed a beautifully framed shadow box with my old used pallet suspended in it. Awe....let's say it in unison....AWE......and I've seen answers that have come when I thought I had left no stone unturned.
What I've learned? To depend on Jesus's example of love, service and sacrifice. In the Old Testament, God gives two commandments. Love the Lord your God with all your heart, with all your soul and with all your strength. (Deut 6.5) and Love your neighbor as yourself. (Lev. 18.19) Centuries later in the New Testament, Jesus follows up with his demonstration of that love by taking on the life of a servant to the point of the ultimate sacrifice. (Phil 2). His walk on this earth was not about large corporations, nor government institutions, entitlements, nor the "business" of church. His walk was about living a life of humility, simplicity and loving servanthood, then to pass it on to the next generation. It was to provide the ultimate sacrifice so that we would see the HOPE of one day residing in the presence of a Holy God. That is why I can rejoice in Jerry's future!
CAN YOU IMAGINE A CULTURE THAT LIVES BY THIS EXAMPLE???? Service and sacrifice that is from the heart? What a wonderful world it would be! That's a song, isn't it?
I recently mentioned to someone that I had not updated the blog because I couldn't think of anything positive to say. After a bit of wrestling I came to the conclusion that I have a lot of positive things to say. Jerry and I shared a life filled with blessings since I was 17 and he was 22. People say he robbed the cradle and I'm glad he did. We were just children and have shared an incredibly rich life! I would not trade it for anything. Even though some people may not be able to grasp it....we are still connected and are experiencing a type of love that many will never be able to understand. For this, I am overwhelmingly grateful.
The journey of Alzheimer disease is not for the faint of heart. Jerry has now reached the level where I had hoped he would never be. That is the level where he is "napping" most of the time, slumped over in a chair and most of his waking hours are spent in a state of blank stares. Years ago, I saw patients like this and thought. "Oh, Jerry's not like this...he's not at this stage yet." But, I'm sorry to say that he has now reached this new place in his progression.
I know this is sounding very depressing and that readers are beginning to turn the post off. It's understandable. Like I said, "It's not for the faint of heart."
Here's where we all need to "man up". Jerry is not the only person in this condition. There are many suffering (actually, it is the loved ones and caregivers who are experiencing the suffering). Not only are they losing their loved ones, but they are losing everything! Here's where I am totally frustrated with how we care for people with these critical health needs. It seems we live in a society that no longer values providing a quality education for their young, nor taking care of its sick and elderly. It's every man for himself where the very wealthy can afford their private care and the indigent are on government aid. Those in between are screwed. Because of red tape and loopholes many private facilities will no longer even take medicaid patients.
Jerry is currently in an assisted living facility with a special memory care unit. His care is primarily custodial care. This means he is not capable of doing anything for himself and requires 24 hour care for even his most basic needs. To put it bluntly, he cannot brush his teeth nor can he sit on a toilet. He cannot get up out of bed nor lie down in the bed without assistance. Do you get my drift? He can, however, get up from his chair and come to me when he sees me. He still recognizes me when our eyes meet and I am committed to my last breath to see that he lives his last days surrounded with love, a feeling of security and not in a state of fear or abandonment.
Jerry was a very responsible family man and provider for our family. He did all the right things....went to school, sacrificed, worked hard, saved. I could not have asked for a better and more caring husband and father for my children. But the cost of this kind of illness is devastating and there are very few resources for assistance. The "A" word is shunned. Everyone knows how devastating it is..but many say their little platitudes then turn a blind eye..hoping it will never happen to THEM.
WELL PEOPLE! WE"D BETTER WAKE UP!!!!! Very few people can prepare for this kind of catastrophic cost. It is only by the grace of God that we've survived for 13 years. And if you've been a hard worker your entire life and earned too high of a social security check...you will NOT get any help from the government. Neither will private medical insurance nor government Medicare touch you. So you'd better have thousands upon millions in your IRA accounts. When I say check "too high", I'm talking $1500 per month in social security. If you receive more than that...there will be NO government assistance in an assisted living facility. You might, however, possibly receive assistance in a skilled nursing facility or "nursing home." MAYBE. The rules for skilled nursing are different. Which actually costs the government MORE money. Go figure!
One wonderful gentleman at Jerry's facility is over 100 years old and has been there for many years. His social security check was evidently below the threshold so he has been able to be supported my medicaid. Recently, however, he received a "cost of living" raise on this social security check which put him $14 over the limit. He will no longer be able to receive medicaid assistance for the assisted living and will now need to be moved to a skilled nursing facility that will accept medicaid. You got it! In order to have medicaid pay for his care...he will have to now move to a MORE EXPENSIVE facility, which will NOT be able to meet his needs...and will cost the government MORE. Figure that one out.....$14 verses $$$$$$$. Your tax dollars at work!
A nursing home for Jerry scares me to death. Because our funds are running out, I am trying to prepare for the next step. IF I put him in a nursing home, we may possibly be able to receive some help. (the jury is still out on that.) I've visited a few skilled nursing facilities in the last couple of weeks. First of all, I will be balling my eyes out if I have to move Jerry from where he is residing now. I am so confident in the care he is currently receiving. He is secure and I know he feels loved and cared for. THAT IS HUGE! Where he lives there is a true sense of family.
The most recent nursing home I visited was beautiful. It was a brand new "state of the art" facility with clean, tastefully decorated rooms. dining rooms and exercise equipment. I mean, it was like a resort (sort of.) My first reaction was a SOCK IN THE GUT, "he'll feel all alone and abandoned." This place was so large that even I got lost. "How could a dementia patient ever survive?" I thought. How in the world could a nursing staff even know where the patient was...much less, know if the patient needed to be "pottied?" This seemed to be a facility for "healthy elderly" or for those who are wheelchair bound and "contained". The dementia patient has totally different needs.
Unless there are tremendous medical needs, a dementia patient primarily needs assistance and stimulation. If not, they will either sit, slumped over for hours on end in wet diapers, or will wander up and down hallways and be at risk of falling. They need constant supervision, like a child in a play area. (Yet, they cannot be treated like a child. They need to be treated with the respect they deserve.) Who knows.. maybe that's how people think they should be treated....just let them wander! Let them sit in their #@#$@#$.....they don't know anyway. BUT, THAT IS NOT TRUE! AND THAT IS NOT CARE! AND THAT IS NOT THE WAY ANYONE SHOULD BE CARED FOR! By the way...in some cultures the elderly are actually treated with resect. Hmmm! What a concept! (Remember YODA?)
Can you tell I'm just about over the edge over the injustice of it all?
I could go on and on. I know this post has gotten way too long. It's just time that we change some of these antiquated laws to be more efficient in the way we treat alzheimer/dementia patients yet be more effective in the cost of healthcare. Our system is terribly broken.
In the meantime, if we do not get serious....we'll all be in eldercare factories before we know it.! IT'S PAST TIME TO GET SERIOUS!
Feelin' Easy. A few from my house with my doggie.
18x24 oil on canvas
As I was riding my bike at sunset today, I looked up and noticed the jet streams against the Carolina blue sky. It was a particularly clear sky with fluffy puffs of white clouds and streaks left behind by the planes headed north and south. I couldn’t help but wonder what journey those people were on. There were many sunsets when Jerry and I sat on the deck watching planes. White jetstreams mark the sky at different altitudes each morning and evening along the east coast corridor. Planes full of people headed to New York to settle a business contract or take in their first Broadway show or to the Carribean on their honeymoon, to Miami to catch their cruise, or children going to see their grandparents. The journey that we are on was unplanned and unexpected. Jerry was a handsome, 52 year old business man, father of three who loved Alabama football, his momma, and his church. He took his roll as provider with great seriousness and never saw it as a burden. He loved to succeed yet was not interested in accolades. He loved to debate politics and give his children advice on business, but mostly he loved the comforts of home with his wife by his side. His family was his total commitment. He would always be there.
I find myself, riding my tangerine beach bike by myself these days. It’s the easiest way to “walk” the dog as she runs along side. Like most couples, they eventually must cross the bridge where one becomes sick and the vow “til death do us part” becomes a reality. That show stopping day happened when the doctor announced in his rather matter of fact voice, “You have early onset Alzheimer’s disease.” That was the day our world ended ...or so I thought.
These thirteen years have been a training ground. I’ve learned to love. I mean truly love. Love in a way that is not glamorous but is beautiful. I’ve learned to endure. I’ve learned to accept. I’ve learned to change and give..or is it give and change. Because it is in the giving that I have changed. The duration of this journey is so uncertain. Each individual declines in their own way. There is no timeline. Can just take one day at a time and be grateful for it.
For years, I have contemplated selling my house and moving to a less isolated area but never felt the “go ahead” in my spirit. There is no one to bounce these thoughts off of. I know of no one who is in my shoes or that has walked in them before me. All I know is that my spirits are lifted when I am in sunshine, see smiling faces and engage in meaningful conversations. These things fill my tank when I am running on empty.
Being an artist keeps me isolated a bit too much. But I am thankful for that gift and it is what keeps my mind occupied and productive. Still, my favorite thing to do is to visit Jerry. He is still the one I’d rather be with. It doesn’t take long, however, to realize that his attention span doesn’t last long. But, I’ll take what I can get.
WIth all this said, I am announcing a 2013 decision. My house is now on the market. It’s as if a still small voice said, “It’s time.” I’m looking forward to what the new years brings and where it takes me. The journey continues.
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Ok. So it's not at the Royal Sonesta in New Orleans or at BJ's in historic Pasadena during the Super Bowl. Seriously, I found this Happy Hour to be so cute and funny. Volunteers! They are so great! Once a month this couple comes and provides entertainment for happy hour. He sings. She plays the piano. The pretzels and O'Doul's are passed out. Non-alcolholic wine is poured for the ladies. It's just so cute. (Call me demented.)
Remember, Jerry is in a facility that is for assisted living folks. That means, most of the residents are fairly independent and require only a little help. Jerry is in a locked memory care unit in the back. It's not locked because it's a prison. It's locked for their safety. They get an extra special amount of care. They cannot do for themselves. (Seriously.) They cannot brush their teeth, feed themselves, dress themselves..they cannot even sit on the potty. Yet, they still have an essence of "self" and are treated with dignity and respect. They are family.
For happy hour, the residents in the memory care unit are brought in with the assisted living folks in the front. It works out great and there seems to be no judgement at all regarding anyone's capabilities. It's a beautiful thing to see such acceptance.
Back to today's happy hour. When the entertainers said they were going to do love songs....I thought I was going to gag. Not again. Sappy love songs! Don't you know what you're doing? But, as Jerry drank his O'douls and I snuck a swig, I could hear the "others" singing. I could hear Andy Williams', "Moon River, wider than a mile. I'm crossing you in style someday". These people were singing along. (at least some of them.)
It's not your ordinary happy hour. While the activity director put the brakes on a wheelchair and the nurse replaced the oxygen tank for someone who had run empty....she gave her a kiss on the forehead..and continued to sing along...with those bluesy love songs...."The more I see you...the more I want you", written by Harry Warren and Mack Gordon and Stardust, sung by Nat King Cole.
Guess the reason I didn't get all weepy sad was because Jerry never much cared for those romantic songs. Now, if they had sung "Alabama's fight song" I suppose he would have responded. But, as it was....I was perfectly ok with his drinking his O'Doul's and staring at me. I just couldn't help it when "I'm in the Mood for Love" began. I looked into Jerry's eyes, sarcastically raised my eyebrows and stroked his cheek and sang. I saw a slight grin. I think he caught it...for a second. I could just see a slapstick comedy coming on. But, I refrained myself.
There was a time, though, that was the "pièce de résistance". The perfect moment when one of the crotchety elderly women yelled, "DO YOU HEAR A THING THAT THEY ARE SAYING?" It was a moment to remember.
No pun intended.
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Ok...I was wondering what to write for Valentine's Day. NOT another sappy, emotional, whining post. Actually, I think Valentine's Day was an idea dreamed up by the Devil himself to destroy every loving relationship through guilt. I mean....it's like this.
When Jerry and I were "newlyweds", which means under 5 years.... I thought Valentine's Day was all about making me a princess. He needed to show me how much he loved me by bringing me flowers and taking me out to a fabulous restaurant ...wine and dine, so to speak. It was all about ME. Not that I was a princess or anything. I've always been a survivor and worked like a trojan horse. BUT, VALENTINE'S DAY! Come on!
It was our first year of marriage and Jerry, I'm sure, did not even know what day is was...much less think of bringing me flowers. When he arrived after work to our little apartment and wondered what was for dinner, I knew I was in trouble. NO! I knew HE was in trouble. We fought like the dickens..."What!!!! You didn't bring me flowers? We're not going out for dinner? Nothing?" He got so mad that he stormed out the door! He left and went to his mother's house.....stripped her rose bushes naked...came back..and shoved them in my face! HERE! Oh, what a memory. Can any of you relate?
After the emotional country music fiasco the other night, I decided I would brave it again...this time during the day. Jerry's activity directors planned a real Valentine's banquet complete with an arched entry way, ceiling full of balloons, and a jazz combo playing those "DADGUM" love songs. When I arrived, I saw an empty chair by Jerry. Everyone was dressed in red. The tables were covered in white table clothes, and the servers were all dressed up in red and black. They served wine (which was non-alcoholic) and prime rib with stuffed baked potatoes. They really went all out.
I was happy to take that empty seat next to Jerry. It was the activity director's seat. She feeds Jerry. Sniff! Yes. He is to the point now, where he cannot feed himself. Even so, he liked his steak. He held my hand and it was truly romantic to be able to serve him in such a way. It makes me cry. ....because THIS is true love. To love and serve each other to the very end once all the superficial trappings have fallen off.
To lighten up a bit.....I asked Jerry if he wanted to dance. It was the only word he said all day, "Yes." It was a beautiful word. Sorry, I teared up....but seriously....what a wonderful treasure we have been blessed with...to be here for each other. It's an unbelievable reward for a lifetime of being together.
So....you youngins. THINK! There are no better riches than long lasting relationships that endure to the very end....Hang in there.
In the Book of John, we see that Mary knelt at the feet of Jesus. That was an act that was filled with humility with a readiness to serve. Jesus didn't demand it. She recognized him and had an enduring love for him. It is the only way to truly live. To serve one another.
And,YES, this is actually the tonight's sunset..a Valentine's sunset..that appeared while I was writing this post. Have a happy Valentine's Day.
I once heard a radio psychologist suggest that we should not write when we are fatigued, hungry, angry, (something else, I forgot). Well, .......
People have said that I will have extra jewels in my crown. Don't know about the jewels in the crown...I don't want them. It's getting too heavy.
There's a country band that comes to Jerry's place once a month. It's Jerry's favorite ole timey country music. After such a great "respite" I thought I'd go and dance with him tonight. BAD IDEA! He is so pitiful. Don't know whether to be happy or sad. When you see these beautiful people…besides the smell of urine, the food drippings on the top of the shoes, the bruises on their faces from falls, the glazed eyes…..what else can I say….I try to see what positive that I can.
Jerry is still beautifully handsome…very skinny…but handsome. His eyes are still radiant blue…but they see far off in the distance and they are "wanting". Tonight, he was completely unaware that I was sitting by him….I was sitting on the wrong side. I should have been sitting on the left. I am so grateful to these talented people who give of their time to bring these tunes to these forgotten folks. There is a "mean" fiddler and a blind bass guitar player with a great sense of humor, the woman with a velvet voice and then there is the man that slides on his steel guitar. They smile bravely and joke but there is one singer who insists on playing the old woeful whining songs that bring the room to a downward spiral. It takes two Orange Blossom Specials and a Good Ole Mountain Dew to get the hands clapping again.
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Jerry was rather unresponsive tonight which brings me such sadness. I think he was even hallucinating but I couldn't tell. There was no dancing. Oh how I wish I could hear a cohesive word come from his voice. We held hands tonight...all four of them, his and mine. His hands are so soft. If there was anything that use to get a rise out of him…it was foot stomping country music. When the Orange Blossom Special was over, he got so excited that he gingerly rose to his feet and walked to the front of the room amongst the singers. He had no idea where he was going. It was so pitifully sad but a smily type of sad.
Ok….now that you are probably crying. I'll stop. I realize this is sad. People say this is cathartic for me. Yes, it is. However, it is real and I am not the only person to experience this. There are many. We will cry. We will be blessed. We will be stronger in time.
Now, I think I'll go eat some toasted raisin bread with extra sugar on top....along with a gin and tonic..then go to bed.
As a caregiver, consistency in routine seems to keeps things working at their best. VIsits twice a week, once during the week and one weekend day, keep the time with Jerry pretty positive. We used to have lunch dates, but because of his declining state, I now go just after lunch, around 1:00. If the weather is nice, I still put him in the car and we drive around town to see his favorite waterfront, the birds and the boats. If the weather's too cold, we head to the facility dining room, which is white table cloth, and have a coke or coffee and a cookie. (I'm always prepared with cookies or peanuts.) After months on end, my mental energy tank begins to run low, so I've found that I HAVE to get out of dodge for a couple of weeks a year to refuel. I can feel myself sinking, my paintings lose their energy and so do I. Luckily for me, my son lives in California, so it's the perfect escape. In our 41 years of marriage, Jerry and I rarely left each other (accept for his business travels.) I wasn't one for girls weekends and he wasn't one for guys golf trips. I suppose you could say that we were stuck to each other like amyloid plaque and brain cells (not funny). The first time I ever left Jerry for over one night, was a year and a half ago. He was at the facility and I went to a two week art school in the mountains. We both survived. Then, last spring, I went to Santa Barbara for a week of intense painting. It was wonderful.
Capitola By the Sea
20x24 oil on canvas
January and February are overcast and dreary in the Carolinas. That type of weather in Alzheimer world is a recipe for depression. So over the last few weeks, I went back to California. With my paints neatly packed, a rented car, and US 1, I drove through Carmel and Big Sur, then ended up in Pasadena with my "old same", my son, Mark. He's good for reenergizing me. We worked on a new website, created a new art video, played great music, laughed and celebrated being together. It was a beautifully crazy fun time. And even though I felt the need to call Jerry almost every day, just like in the old days, each day, his nurses who are well versed in knowing how to make the families feel good, would say, "He's fine. He danced with me today." This trip was the perfect thing to refuel my emotional and mental energy tank so that I could go back to him.
Refreshed after two weeks, I walked into the facility curious if Jerry would know who I was. The aide had him back in his room, bathing and dressing him, shaving and putting all his "smell good" on. When he walked out, I melted as usual. He put his arms out, but he did not know who I was. (He gets lots of hugs from everyone who sees him). I wrapped my arms around him, pulled away and told him it was me. Hugged him again and laid my head on his chest. As we walked down the hall, I could tell he had a happy countenance. His eyes had a brightness to them. Even though he didn't know who I was, he knew he was with someone who made him happy. We wandered down the hall to the living room but he wasn't content staying at the facility. WIthout words, I could see he wanted to go. This is our routine...go, get in the car, and drive around. He knew. He knew who I was.
If you have any opportunity to enable a caregiver to get away and have a re-energizing retreat. Please do so. It will help them go the distance. Thank you all for encouraging me.
Seriously, I've not had ramin noodles since my college years. That was many years ago. Not that I'm poor or anything. It's just that my priorities have changed. No longer is it important to me what I eat. Or what I spend. The days of fine dining and romantic evenings are no longer in my scope of daily life.
After surviving the holidays....the beautiful times of worship and days of frolicking with my grand boys..are over. It's back to reality now. After being away from Jerry for a little over a week, I found myself missing him terribly. This weaning process is so weird. I showed up at his "home" and he was on an outing. So, I waited at the nurses station, catching up on holiday chatter. After about an hour, the troops started coming through the door one wheelchair at a time. I waited ..watched...greeted them all. The wheelchairs were causing a slight traffic jam at the door. Then, Jerry appeared behind them. His eyes sprinted into action, he leaped...even bounded over three wheel chairs get to me..arms stretched out.
This was total confirmation that this was where I belonged. This was where I needed to be. This is my priority. There is no greater purpose in my life than to care for my Jerry....my beloved for so many years who provided for me and enabled me to be with my children. It's the least I can do to be there for him now.
So often...after so many years of Alzheimer's disease....we begin to be accustomed to life without....without the husband.....without the dad....without the granddad. But the truth be told.....it is "WE" who leave the Alzheimer patient...not they who leave us.
For a bit, I have struggled with how to move on. Even the staff has encouraged me to move on. "He is not going to get any better." Jerry is completely secure in his surroundings and very well cared for. Sometimes I think..if I never came back..would he even realize it? BUT, when I arrived and he leaped over three wheelchairs...I realized.....NO! He still needs me...even if for a few minutes. What in the world could be more important than that....but to be there for the one who is helpless and is in his greatest time of need.
Don't know what this has to do with Ramin Noodles. Maybe it's my mind that is "noodley". I suppose it's that ...nothing really matters but to love the one who needs me and love sacrificially. Superficial lovelies are tantalizing and, in this day in age, what's seemingly important...but to me...what is much more fulfilling is to love those who cannot "give' in return. To love those who "in this world" seem to be of disposable value.
I've put my home up for sale. It truly is not a problem. The equity will be put away for the cost of Jerry's care. That is of utmost importance. I don't want him, ever, to be away from his loving and secure environment. Thank GOD, I'm a "nomad" and use to change. I delight in new environments. So moving on, while, I admit is a bit "sniffy", will be ok. Jerry's security is what's most important. That brings me peace. God will provide a new and wonderful place for me. I'm not afraid.
So there's an update. The ramin noodles were quite comfy. We'll see what life brings this year. It will be a good year.
After recently reading an article written by Carol Larkin on the Alzheimer Reading Room website, I learned about Alzheimer patients and tunnel vision. She suggested making a narrow circle out of your thumb and forefinger, holding it up to your eye and taking a few steps. It was quite an enlightening exercise.
Then I got to thinking about Jerry. When I walk into the room he always pops up and walks toward me. Obviously, he recognizes me. But the tunnel vision thing explains a lot. As Jerry comes closer, his eyes direct straight ahead on his eye level. Since he is 6’4”, that means his gaze goes right past me to the back of the room. I usually place my hands on his cheeks and direct his eyes down to my eyes hoping to connect. Sometimes we connect, sometimes we don’t.
Then I got to thinking! You know I do that a lot! THINK! If I am right in his face...think of coming really close and looking into the end of a tunnel.....HE PROBABLY ONLY SEES MY EYEBALL! Eee gads! “Who’s eyeball is in my tunnel?” he must be asking. That’s also why he doesn’t see me when I’m sitting next to him and he’s staring straight ahead. There is no peripheral vision. It’s all making sense! Because if I get up and move about 4 feet out in front of him....he sees me. AND on a good day.....he knows me.
That explains why he doesn’t put a paint brush to paper on a table. He doesn’t see the paper. He doesn’t look down. He looks eye level. This is why he doesn’t maneuver steps well...especially steps that go DOWN. He doesn’t see the step! AND why he reacts to people as we walk down the hall from a distance....he sees them! But once he gets close and they react back...he doesn’t see them.
This is just too good to be true! I feel like I’ve struck gold! I’m so giddy that I’m jumping up and down. Oh...my knee...ouch!
This morning I was thumbing through my Bible and ran across a crumpled up sheet of paper with a prayer that I had written a little over five years ago. It read as follows:
I pray:
..that each time he says a comment, it’s like I’ve heard it for the first time.
..that I’m “here” when he has a lucid moment.
..that I never forget who he was.
..that I love the person he is now.
..that I learn to accept the changes with dignity and grace.
..that I never neglect to give him the respect that he deserves.
..that I foresee events that may put him in harm’s way.
..that I protect and honor who he is...a beloved creation of God.
..that I love him as God loves him.
..that I care for him as God cares.
..that I never underestimate what’s behind those empty eyes.
..that I treasure the laughter and laugh in the laugher.
..that I lower expectations and delight in the surprises.
..that I can be happy in his happiness
..that I not resent the future but treasure the NOW.
..that I realize that it’s ok to cry.
..that I can communicate in the silence.
..that it’s ok to love.
..that I rest in my redeemer.
After our wonderful visit on Sunday, I visited Jerry again today. When I arrived, he was sitting alone in the activity room, where most of the residents watch tv. As soon as he saw me, he stood up. As he approached, I could see the blank look in his eyes. He truly was blank...however, he knew I was “someone”. We never made eye contact.
I’ve never seen him quite this lost. After wrapping my arm around him and rubbing my hand across his warm and fuzzy fleece covered chest, we walked into the back room where the head of the unit was doing her paperwork. I said, “He’s really not “here" today.” She smiled and nodded her head. “ I don’t know “where he is”, but he’s been lost today. In fact, he’s been lost all week.” She said that on Monday, he slept the entire day and compassionately told me that there would be days like that. "We’ll be having our good and our bad days" she said.
I still wanted to make the most of this visit and take Jerry out front. We sat in the living room by the fireplace. Sat with no words. I could feel his warmth and watched as he occasionally would light up. He mumbled several times but had no idea what he was saying. After a few minutes, he seemed to come around. I suggested hot chocolate..he said, “Yeah.” It was a good moment, but after a short time, it was time to go back.
I’m not saddened by today’s visit. It ok. Even though it wasn’t the same as last Sunday, it was still precious to me. I think it was to him also. So, as I read that through that prayer...it is as pertinent today as it was 5 years ago. While Jerry’s condition has definitely changed, the prayer has not changed. The answers have not changed, in fact, the answers have sustained me.
Jerry’s been doing pretty well lately. Today, he was a shaved and dressed up in a beautiful blue striped button-down shirt and khaki pants. When I walked through the door, he was rounding the corner of the hallway. His eyes caught me, he came running, wrapped his arms around me, then they drifted off across the room. Once my arms are around him, I want to hold him tight....but, he was ready to go. He liked the Christmas music playing on the radio and even attempted to turn it up by reaching for the air vents. I knew what he was trying to do. After a while, it becomes easy to read the mind of an Alzheimer person. It was a gloriously beautiful day in New Bern. Perfect for a picnic. So we rode by the local KFC (haven’t eaten at one of those in 20 years) and got lunch to go. The park was the usual one by the water where all the people come to feed the seagulls. I placed a towel on the bench so it would be a little warm and soft for his boney behind, then another towel for a table cloth. Jerry actually was able to maneuver himself into the picnic table which is something he hasn’t been able to do in months. The nuggets worked just fine but he loved the cold slaw and sweet tea.
Lately, Jerry has been carrying around the Bible that the hospice Chaplin gave him. So, today I thought I’d bring his own Bible from home. As we walked across the street toward the water, he tucked his Bible under his arm like he always use to do. Once we sat down again, he pointed to the cover, and said, “Holy.” He began to thumb through it. He randomly stopped on a page where he had underlined some verses from years ago. Matthew 7: 13,14. “Enter by the narrow gate; for the gate is wide, and the way is broad that leads to destruction, and many are those who enter by it. For the gate is small, and the way is narrow that leads to life,and few are those who find it.” Interesting verse. Especially when we come to the end of life...I can see that the gate is narrow and I’m so glad we found it... the only thing left is the best thing.....LIFE everlasting. Thank you God.
After about 20 minutes on the bench, Jerry wanted to walk. There’s a sidewalk that surrounds the park along the water and the seagulls are fluttering everywhere. Jerry, frail, with his Bible tucked, me on the other side trying to keep him stable slowly continued our walk. I could see, up ahead, two rather “thuggie” looking men sitting on their motorcycles at the end of the sidewalk....looking rather....well, ”thuglike” dressed in their motorcycle get up. We hobbled on out in front of them to cross the street when one of them said, “I like your choice of books under your arm. The Good Book.” Jerry held it. I smiled. The other one said, “Yeah. I wish everyone would read it.” Whew! WIth a smile of relief.....“Your right.”, I said.
Like I said, thank you God. Until next time, the journey continues. Christmas is coming.
I just love to paint. I wish I didn’t have to charge, but I have to find a way to pay Jerry’s medical bills. If I didn’t need the income, I’d paint for free. It would be my gift....a privilege to share. Right now, I find myself in the middle of some pretty emotional paintings. Don’t know why I am asked to paint these scenarios. I certainly don’t have the monopoly on the corner of sadness. In fact, I am at peace and have so much to be thankful for.
Shadow is finished. He is the precious family dog, who is twelve years old and now has cataracts. He, clearly, is getting on in years and I’ve been asked to paint him. However, it is much more than painting the family dog. The husband of the family, has just place his mother in an assisted living facility for people with memory loss. The doggie family member is just an emotional extension of losing the mother. It’s a way of processing loss , a passage in this thing called “life”.
I also am painting a beautifully peaceful ocean scene of the family summer place where everyone would gather for summers on the beach. The mother of the family, too, has Alzheimer disease and has been placed in an adult daycare. This painting is a gift from the daughter to the father of the summer place that holds such dear memories.
I am thoroughly enjoying painting these scenes. Whether it is the beloved family pet or the family memories......I can feel the attachment. I am honored to be asked to paint the memories that these families hold so dear.
I brought Jerry home yesterday. It was the first time in over a year. It was a trial run for when my daughters come down. I know they want to see their dad, but it is difficult with 5 grandboys. I know they want their boys to know their granddad. But, truth be told, it is not going to happen for the boys. There is a remote possibility for my girls to still connect.....it will take time and silence, however, with very little return at best.
Jerry’s visit home, yesterday, was so surreal. He definitely recognized that he had been here before. However, there was no emotional connection. I would watch as he walked on the deck, overlooking the pond. He stood there....looking down. I wondered what was going through his mind. It was as if he was checking things out. He also looked at the stack of bills on the table, as if he was wondering if I was doing a good job. I don’t know. He walked over to the table next to the sofa. He picked up a piece of paper. I wonder if he recognized that this was home. I sat him on the sofa and turned on football. He was not interested. He was disconnected to everything. Yet, comfortable.
Physically, I noticed that he was not stable on his feet. He had an “accident” and had to take a shower. He was totally detached as I bathed him. Several times he lost his footing going down the steps. Yet, when we went down the stairs to head toward the car, he was surefooted. I kept saying, “Hold on to the rail. Hold on to the rail.” He didn’t. He “surely" headed straight to the car.
I am puzzled by the visit. I think he knew where he was. I think he knew who I was. I think he was secure and comfortable. But, I don’t think there was a connection. I can’t quite figure it out. I suppose I should quit trying to figure it out.
All I know, is that on the drive back, he said with resolve, “I love you.”
I’m confused. Guess I’d better get back to painting.
