Did that really happen? The events of the last month seem so surreal. No matter how long we prepare for the loss of a loved one it is a tremendous loss. Still life goes on. Babies need to be changed, children go to school, women shop for spring dresses, men set up their tee times, the Apple store is still crowded, traffic backs up at stop lights. But wait. A life was just lost. It happens every day.
Times like these make me question my faith. Is God really real? Why didn't he answer my prayers? Why did such a good man have to suffer in such a way? Why did my children have to experience such trauma watching their daddy leave?
This has to have been the most intense week of my life, words cannot express the amount of sadness and love that has passed through my heart, soul and mind in such a short amount of time. Short...but long. Jerry's journey was so long..but his end was so short. So final.
These are questions that probably will never be answered. However, now that two weeks have passed, my head is beginning to process what happened. I can see so many prayers that were answered.
First, my greatest longing was to have Jerry surrounded by those who loved him. I could hardly bare the thought of his slipping away alone. That prayer was answered in that his last breath was taken while being cradled in my arms. His children were draped over him. For 7 days the love spilled out was almost tangible.
Second, I cried out to the Lord that Jerry would never have to be moved from the place he now had called home. And when it came time for me to decide to move him because of Medicaid requirements... that prayer was answered. Jerry was able to finish his days surrounded and cared for by his closest caregivers.
The timing was uncanny. My son, who is usually in Los Angeles, just "happened" to be in town for a photo shoot, when Jerry began to take his last decline. We were all here. A beautiful night aide sang, "oh, how I love Jesus." I had never met her before. Such gentleness and strength I've witnessed. The response from friends was overwhelming. I cannot even fathom it.
This, more than likely will be my last post. :( It has been an honor to serve in such a way and I only hope this blog has provided strength and hope through a seemingly impossible journey.
So, is my faith shaken? It make have been rocked a bit..but it is still firm.
All I know is this. It is a fact that this man called Jesus was crucified. He gasped for his last breath. Just as Jerry did. He cried out, "Why have thou forsaken me?" He knew anguish and suffering. Was Jesus merely a man? All I know is that his disciples, afraid and with complex emotions, went into hiding. But, when Jesus appeared before them they must have seen something. Thomas actually felt his nail pierced hand. Jesus truly was their risen Savior and they were willing to be crucified themselves afterwards. So, if Jesus was who he said he was and was willing to provide a way for eternal life with God, the Father of this universe....then I suppose his promises are true. Jerry is no longer suffering and he is now at peace with his Heavenly Father and he has no memory of what just happened. While it may be excruciatingly sad for those who are left behind, it can't be any better for those who are moving forward free from suffering and into the glorious light of the Almighty God.
Jerry, we will miss you. You left a huge impact on so many lives. You were God's gift to me and I will be forever grateful.
I Corinthians 2: 9-12
but just as it is written,
“THINGS WHICH EYE HAS NOT SEEN AND EAR HAS NOT HEARD,
AND which HAVE NOT ENTERED THE HEART OF MAN,
ALL THAT GOD HAS PREPARED FOR THOSE WHO LOVE HIM.”
Jerry took his last breath, wrapped in our arms, early this morning at 3:00 a.m. April 7, 2014
A memorial service will be held at Providence Baptist Church in Raleigh, NC this Wednesday, April 9, at 11:00 a.m. A visitation will follow afterward at the church.
Beautiful Jerry, we rejoice for you.
Precious friends. Thank you for your many messages and calls. Will be back after this beautifully tearful time with our dear Jerry. Love you all. We are so blessed.
King James Version (KJV)
23 The Lord is my shepherd; I shall not want.
2 He maketh me to lie down in green pastures: he leadeth me beside the still waters.
3 He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake.
4 Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.
5 Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.
6 Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord for ever.
Jerry update. Hospice has been called in. This time it's for real. In the meantime, I wanted to share my cry out to the Lord in 2007. I found it today when rummaging through my "stuff". God was faithful to answer these requests of mine.
My Prayer 2007
Lord, I pray…
-that I never underestimate what is behind those eyes.
-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.
-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 harms 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 treasure the laughter
-that I lower expectations and delight in the surprise
-that I am happy in his happiness
-that I not resent his slowing down.
-that I learn to communicate in silence.
-that I treasure the now.
-that I not resent the future but that I treasure the moment.
-that I give myself permission to cry
-that I remain faithfully by his side until his last breathe.
-that I rest in my redeemer.
-that I remember to PRAISE and give thanks.
Today in spin class, our instructor told all of us crazy spinners of an Asian man in her class years ago. He was 90 years old, agile and full of life! His motto...."Oxygen make you happeeeeeee!!" I can't help but laugh as I recall all the times on that bike....shouting out, sweat pouring down, "Oxygen make me happeeeee!" Exercise is key to surviving this marathon.
As most of you know, the Alzheimer journey can be quite long. Even the end stages can be long. Yesterday, when I went to see Jerry he was sitting back in his room in his lazy boy. What a blessing to have that chair. It was given to us by our dear friends from our church. I was such a "hoity" thing, that poor Jerry never got an easy chair his entire life! I'm glad he has one now.
Up until now, Jerry has usually been in the activity room with all the other residents. Now, however he is on the cusp of "non-ambulatory." He no longer can walk on his own. A wheelchair has been brought in, however, his legs are so long that he sits crumpled over in the chair and they are afraid the chair will come out from under him and he will fall. SO, he is now, all comfy in his recliner. Bonanza is on the television.
Back to yesterday. When I walked into his room, he must have recognized me. His room is a corner room with two large windows. The sun was behind him so all I could see was his silhouette in the chair. But, as I got closer, he was leaning forward and one arm was beginning to stretch out. Remember the days in the past when he would come running? Well, yesterday, in that split second, his arm gestured it's way toward me. We sat together in his easy chair and just "Be--d". What I mean by that is that there was no talking, not much moving, we were able to just BE. BE together. Side by side.
When the dinner music began to play, I noticed Jerry getting a hint of restlessness. Every mealtime, the staff puts on the same crazy loud jiving music. It's the Que that it's mealtime. All the residents, no matter how much they have deteriorated, seem to spark at that Que. I knew I couldn't move Jerry and I'm glad I didn't. When the staff members came in, they told me of the risk of the wheelchair, so all three of us walked Jerry down the hall. With a girl on each side (HE WOULD HAVE LOVED THAT), and me in the front encouraging him to come forward (HE WOULD HAVE LOVED THAT, TOO), Jerry was lifted up and his legs weakly straightened below him. He moved them ever so slowly, about three inches at a time, completely off balance with very little weight on them, but moving forward until we got him to his table.
This too is yet another shift. Another first.
That is where we are. It's time to get back on that bike now.
I've been listening to Tracy Chapman's song "CHANGE"….over and over and over again today. It was given to me from a friend who is experiencing the same Alzheimer loss.
If you knew that you would die today
If you saw the face of God and love
Would you change?
Would you change?
If you knew that love can break your heart
When you're down so low you cannot fall
Would you change?
Would you change?
How bad how good does it need to get?
How many losses how much regret?
What chain reaction would cause an effect?
Makes you turn around makes you try to explain
Makes you forgive and forget
Makes you change
Makes you change
If you knew that you would be alone
Knowing right being wrong
Would you change?
Would you change?
If you knew that you would find a truth
That brings a pain that can't be soothed
Would you change?
Would you change?
How bad how good does it need to get?
How many losses how much regret?
What chain reaction would cause an effect?
Today I went to see Jerry. It was a real awakening again. A dog trainer had come with therapy golden retrievers. They were beautiful and kind and attentive.
Jerry was seated in a comfortable club chair. I went over and sat on the arm of the chair…placed my arm around him and stroked his hair. He didn't know me.
I really didn't look in his eyes. I just looked at his frail arm and hand and felt his chest. I don't understand how anyone can live in this emaciated condition.
He does not know pain. He is not aware. I am thankful.
I've been crying off and on today. The end is near. Days. Weeks. Maybe months.
The reality is…..
If you knew that you would die today
If you saw the face of God and love
Would you change?
The end of life is real for everyone.
Soon, the gates will open for Jerry. One thing for sure is that Jesus is opening that gate and it will only be a matter of time before he is ushered into that beautiful unimaginable heaven where there will be no more weeping and he will be whole again. I can only imagine what awaits this beautiful human being. I will be only ecstatic with joy for him. Not to be held captive. To be free!
There is a time when all of us look back on our life and ask….."would I change?"
If I had known this was our journey would I have changed it? No! Would I choose it? No! But, I would do it again….marry Jerry again…live this journey again? Yes! God has revealed himself in ways I could not have imagined.
His grace and mercy..words cannot explain.
I"m sorry I haven't written, but I've had a struggle for what to say. Like a boat on a choppy sea, my mind has been tossing back and forth every emotion that there is.
I want to remain positive, but honestly have had some difficulties finding the "positives". There is no sugarcoating the end stages of Alzheimer's disease.
Recently, I had lunch with a dear friend. Both of our husbands were diagnosed at the same time. Fifteen years ago. We sat across the table at the pizza parlor completely bewildered that we are actually discussing the same scenario....fifteen years later. Her husband, Tim, has been in a skilled nursing facility for several years. I had contacted her because I am considering placing Jerry in a skilled nursing facility. There is something positive....a comrade friendship that has lasted fifteen years.
The whole placement thing is so convoluted. Jerry has been in an supportive and loving facility for 3 years. But as we are facing 15 years of the alzheimer journey, the funds are running out. I am at least considering the fact that I may have to place Jerry in a government funded medicaid bed. I've found, for me, that it helps to space out my days (even hours) of decision making. Some of these decisions are so intense that, without realizing it, I become heavy mentally, downcast...sort of like that little fella on the Zoloft commercial...with tired eyes and furrowed brow. (and we women do not need any more wrinkles!) Anyway, it helps to tackle these things every OTHER day. The days in between are spent with friends and trivial laughing and art sales..... my spirits are lifted and revitalized for, yet, another day of searching.
As I walked the halls of four skilled nursing facilities, I couldn't believe the difference. Two... were completely ...unquestionably...not an option!!! Number three would not even take a waiting list. Number four...which was very nice...had no beds but would keep me in mind if they had an opening. I'm praying for that one. It is near to my girls, so they could visit. It was clean, and bright, with a beautiful little garden.
Here's something positive. I AM SO GRATEFUL of where he is now. Thank God that he has provided this place. His care is personal, caring, and complete..all the way down to goldfish at snack time. It is secure and he is without fear.
Jerry seems to have taken another decline. Many days he is unstable and I am expecting a call that he has taken a fall. Today, however, was a full moon...and a good day. I think he knew who I was. He was standing upright. A string of words (unintelligible) came out when he saw me. He was the most " aware" that I've seen him in a few weeks.
Each day in Alzheimer world is different. Up / down. Awareness ebbs and flows. Eyes brighten, then dim. It can make you sea sick. There are no guarantees....except NO guarantees. No expectations..accept NO expectations.
I apologize if I sound so grim and depressing. I have no bridge to jump off of. Besides...that is not an option. We, caregivers, MUST keep going! The sooner we realize that ...the sooner, we suck it up and KEEP GOING! One day at a time. One foot in front of the other. ..and I'm thankful I have two legs that hold me upright and can keep me stable and a relatively clear mind to be a caregiver.
The sun is peaking through the clouds now and the gray sky is turning a beautiful blue. I am hearing the waves rolling in. It's time to get out there and feel the sunshine. That is something positive!
Tomorrow is Jerry's birthday. On February 27, 1948 a beautiful little baby boy was born.
From the Psalmist David:
Psalms 139:1-6. O Lord, you have searched me and you know me. You know when I sit and when I rise; you perceive my thoughts from afar. You discern my going out and my lying down. You are familiar with all my ways. Before a word is on my tongue you know it completely, Oh Lord. You hem me in--behind and before; you have laid your hand and upon me. Such knowledge is too wonderful for me, too lofty for me to attain.
Some wonder why I feel the need to go see Jerry on his birthday. After all, he does not know it is his birthday. He does not know who I am. Any day for ice cream, is a good day. So, why ON THE DAY.
I suppose it's because, I believe that God knows exactly what our days will be like before we are ever born. Jerry's days are numbered, as are all of ours, and he is still with us. Jerry cannot communicate and is not aware in MY/OUR world, the world outside of Alzheimers, but his life still has meaning. His life has GREAT meaning, beyond our small little minds, and his Heavenly Father is holding him close. According to scripture, God knows Jerry's thoughts. He is familiar with all his ways...whether I know them or not.
So...tomorrow, I'll drive to New Bern to celebrate Jerry's life, his meaning, his contribution to this world. Happy Birthday Jerry.
It's just a hop, skip and a jump over to Jerry's place. (about 45 mins) I remember reading in the bulletin that they were having a Valentine's Day party. I remember making a mental note to be there. I forgot.
Today, I had a doctor's appointment and was planning on heading on up to see Jerry afterwards. I arrived about 1:30. The party was over at 1:30. Oops! When I headed on down the hall, the accountant waved and said, "he's in the dining room." I waved back to her and made a turn to the left into the dining room. There were pink and red balloons attached to each chair and Jerry was sitting at a table with a crown on his head. He and Sarah Sue were the king and queen! Oops, again!
Thank heavens the entertainment was still singing and playing and Jerry caught a glimpse of me in his eye. I went over to his table but by the time I got there, his eye had gone elsewhere. I curved right on around to his left side and sat next to him. He wasn't sure what to do, but his arm gently patted my shoulder, as if to say, ......"I know you"....or "I like you".....or something like that.
A minute later, Sarah Sue came over to see me. She was queen and she was waiting for her escort (Jerry) to walk her back to her room. Sarah Sue, another resident and Jerry's neighbor, is a stately southern woman with a down deep southern drawl. She is very proper. She is in her own world and takes care of Jerry. She speaks quite fluently and tells me how it makes her heart pitter patter when she sees us together. She tells me how much he ate and how sweet he is and if they are taking care of him and if he's walked or not walked down the hall. She takes on the caregiver roll and tells me all the secrets at the facility. (Really, they are her own made up secrets...but I'll never correct her on that. )
Something has happened in the last six months. Jerry has "gone away". He is not here anymore, even though he still taps me on the shoulder. Honestly, he probably taps everyone on the shoulder who comes to give him a hug. That's just the way he is. But, as for me? I'm another someone who loves him and who he loves back. He loves them all and I'm no different. It's ok though. He's moved on. I've accepted it. It's taken 15 years to get to this place. He's still my first love and my beloved Jerry and there will be no other like him, whether he knows me or not. He's in a good place. He's at peace. I'm at peace knowing that.
It's year 15 now and Jerry is holding his own. One day is it virtually impossible to wake him up. The next day he is fairly alert, seems like he recognizes people, and is actually wanting to go for a walk. There no predicting.... no expectation....every day is different. In order to keep from going crazy myself, I've decided NOT to evaluate each and every day individually..but to look at everything as a "way of life". Everyone living has good days and bad, happiness and sadness, vibrant days and exhausting days. It's a choice in attitude that we must make.
It's time for an attitude adjustment to the Sunny Side (I love that song!) So, to make things a little brighter, I'm going to change my vocabulary. From now on it goes like this.
WEAK (sounds so negative and pitiful). Weak wIll be termed as RELAXED. Sort of like when you are totally relaxed on the couch and you don't want to get up. When someone says "Get up." You respond by raising your hands and saying "Pull me up." Most of us would call that lazy...but I'm calling it so relaxed that you can't get up. It's not a bad thing. It's actually nice. As Jerry continues he will become more "RELAXED".
GLAZED (sounds so foggy, distant, and again, pitiful...unless we're talking donuts). Glazed will now be termed DREAMY. Dreamy, which are the way Jerry's eyes have always been will become dreamier. That's not such a bad thing either. Maybe they are dreaming about heaven.
APHASIA (the inability to speak)...we'll call that the "silent treatment". Heaven knows, as any dutiful wife would do, I've given him the silent a few times.
SLEEPING (which we all know is slumped over in a chair). Sleeping will now be termed NAPPING. Oh, what I wouldn't do to get a nap.
CONFUSED/DISORIENTED (sounds so disconcerting.) Confused will now become BLOND. Funny, because he's the dark headed one with the good head on his shoulders. I'm a blond. So I get it!
WEEPY (sounds so sad). Weepy will now become TOUCHED..as in a moment of reflection that is joyful to the heart, like when we sing hymns. These are tears of joy.
UNRESPONSIVE (sounds so "gone"). Unresponsive will now be termed as on VACATION. Now, doesn't that sound so much better? Think of your best vacation...don't you occasionally find yourself drifting off to your favorite place? At some point, Jerry will be on permanent vacation in Heaven, free of this terrible disease forever. It doesn't get an better than that.
And when people ask, "How is Jerry doing?" I will answer. "He is at peace. He really is at peace."
Keep on the Sunny Side, always on the sunny side.......of life.
Dementia and Montezuma. You know that terrible "bug" that effects you at both ends! The East coast has been iced over for several days, and I've not been able to visit Jerry. Calling before heading up to New Bern to see if the coast was clear, I was asked to bring more diapers. "Ok. …but didn't I just bring you a CASE?"
Just for the record, I use to be so embarrassed to buy adult undergarment products. That was BEFORE Alzheimer's disease. I'm sorry to divulge this (Jerry would probably be mortified. But since this is suppose to be a helpful and informative blog, I know he would be willing to help.) Jerry has been incontinent for years. I know if he were aware, he would be embarrassed. But he is not aware and shows no quams at all that he has to be helped to the bathroom. At first, it was "underwear". Really no different than his "tightie whities". Just a little fluffier. In the last 6 months, however, diapers work better because he is unable to sit on a potty. The tabs on the sides make it easier for the staff to get them on and off.
Back to today. When I arrived at Jerry's place, one of the staff members told me he was in his easy chair in his room. That's normally not the case. Usually, he is in the "family" living room with the rest of his friends. Today, I walked on back to his corner room which is a nice sunny yellow with two windows that let the light in. There he was, sitting in his maroon lazy boy with his eyes closed. His room mate was in his lazy boy too, watching a football game. Not an usual sight for most guys on a Saturday. But Jerry was looking a bit pitiful.
Since the snow and ice had kept me from visiting for several days I was anxious for my hug. I walked over and sat on the arm of his chair. Repeating his name several times, I put my arm around him and waited for him to respond. His eyes slowly began to open, blink a bit and they attempted to focus. I honestly think he knew who I was but this time his were wanting and red and glazed over, like a little innocent child with a virus. : (
I don't see Jerry that way very often. I kept stroking his cheek and all I wanted to do was put my arms around him and hold him close. Of course, he had know idea why I felt that way. He didn't know that Montezuma had come to visit the day before, nor did I.
The aide came in to take him to the bathroom. She told me that the whole unit had been sick with an intestinal virus. Yikes! Can you imagine how bad that was? All of these folks are incontinent. I cannot imagine the chaos in the unit when all of them were dropping like flies and sick at both ends. I think you get the visual.
I could tell that something had happened because a virus can really effect a dementia patient. It's as if Jerry took a downward shift back to where he was last summer. Weak. No food. Dehydrated. Disoriented. Confused. As far as I know, he has not contracted a virus since he has lived at his new home. But this virus ran rampant through the patients and the staff.
I now see, for the first time, how it weakened Jerry. I had a glimpse of what he will look like in the days/months ahead. I did not like it. It was a reminder of how I need to appreciate every day we have left….how I need to hold him whenever I can. Those glazed eyes were endearing as if longing for me….like an injured soldier on the battle field calling out for his mamma.
All I could say was….. "I'm here. I 'm here. I'm here."
Today is Sunday. For almost all of my life, I've gone to church on Sunday. Since I was a little girl, my parents took the family to church. It was a way of setting aside one day a week to "give to God". (To NOT go, doesn't mean doom and damnation, but really everyday should be given to Him...after all, each day has been given to us to begin with.) Anyway, it was our Sunday ritual and I am so thankful for that habit that has been engrained in me. So....today was one of those days that I wasn't going.
Occasionally, as a caregiver, the WIMES get a hold of me. The Whoa Is ME Syndrome sprouts out it's claws and digs deep within me. Or, it could be called the "Why ME". Like an angry cat....those claws spring out and grab hold. No matter how much I shake, they won't let go. ME! ME! ME!...Lord, how long is this going to last? Can't you see how lonely I am? Jerry is at peace. What if the money runs out? On and on and on...those claws of anxiety leave their scratch marks then dig in.
So, today I wasn't going to church. Afterall, I made my appearance last week. I'll just stay in my "self" and head on up to be with Jerry. I'll sit in the facility living room and hug his side and lick my wounds of self pity. Jerry will sit. Well....he will sit with my warm body hugged up next to him.
On my drive up to New Bern, there was something inside that kept saying "Turn around." Ignoring the voice, I kept on driving. All of a sudden I found myself making a U-turn. I headed straight to church without hesitation. It was as if I had no control over the car.
While at the service, I found a sweet, sweet friend to sit with. I miss having my kindred spirit to sit with. The music was beautiful and set the tone for what was ahead. So...guess what the sermon was about.......SELFLESS LOVE. The arrows were pointed right at me....and those claws were beginning to lose their grip. "Keep loving each other with a selfless love by continuing to love each other."
1 John 4:7-10.
"Beloved, let us love one another, for love is from God and everyone who loves is born of God and knows God. The one who does not love does not know God, for God is love. By this the love of God was manifested in us, that God has sent His only begotten Son into the world so that we might live through Him. In this is love, not that we loved God, but that He loved us and sent His Son to be the propitiation for our sins."
This selfless love is something that cannot be obtained on my own. This kind of love means to set myself aside....This kind of love can only be from GOD who has already demonstrated what selfless love really is.
SO....there ya have it. There were words that I was suppose to hear today. Words that reminded me of the journey that Jerry and I are on. Words, from Holy Scripture, that supported the journey with the substance necessary to continue. That it's not about ME. It's about completing the journey that has been set before us. It's about the journey and the message of love to the N'th degree. It's about the legacy I have to leave to my children.
The claws have been loosened. They have let go and only left a few little scratch marks. Scratch marks that will heal as I continue.
I later visited Jerry. The visit was wonderful in a precious sense of the word. The living room was filled with residents watching basketball.....and the "love seat" was left for us.
This is so random.
I want to preface this by saying two things.
1. Currently Jerry is holding his own.
2. if Jerry is hungry.....I'm all for giving him what he wants. In no way, should he be denied.
3. I could not ask for better care that what he gets at his place of residence.
The home where Jerry resides is on a well planned set schedule. Each resident is woken up around 7:00 and being served breakfast about 8:00. Some of the residents are actually out of their PJ's and dressed before breakfast. The others are cleaned up after they eat. Their first activity is at 10:00. Lunch is at 11:30 or 12:00. Then rest time until 1:30. Then another activity (many times with the more independent residents) at 2:00. Dinner at 4:30 or 5:00. Then, sometimes a visiting band comes to play at night. They have a full day.
Other residential facilities, I've heard, allow their residents to sleep in. So if a resident sleeps in until 10:30 or so....is that a good thing or not so good? Is it ok that they miss breakfast? I suppose if the resident was in that routine before they were in a facility and that is how they lived.....why shouldn't they be allowed to continue? This is their home. Right?
I've been thinking about all of that lately. If Jerry were not woken up, he would sleep...who knows....all day, maybe. RIght now he naps most of some days anyway. However, since he is on a routine and woken up...this means that he does not skip mealtime and does not skip an activity (unless he is in one of his "unresponsive" zones). This means he gets more stimulation. This means his days are not as mundane. So that's a good thing. Actually, Jerry probably does not know what happens from day to day, nor from minute to minute either. He is not aware of anything after the "moment" but I do believe that being surrounded with upbeat activity sets the tone for a more happy day.
Understandably a staff needs a schedule and structure. What if the one who is allowed to sleep becomes hungry and wants breakfast? The staff can't exactly have an open kitchen. It would be like the woman in the shoe, who had so many kids she didn't know what to do. Sort of like my daughter's kitchen. Never closed! Chaos!
Do the residents actually recognize hunger? Or is it the routine of mealtime that makes them pick up that chicken sandwich? So what happens if they skip a meal and sleep instead? Is that so bad? I skip a meal sometimes and, trust me, I'm not wasting away. Do they need to eat for nutrition, considering they are not ever going to get better anyway? Or should they be offered an opportunity to eat simply to satisfy their desire...I mean if Jerry wants ice cream...let him have it...if he doesn't care about eating....why force him? Questions! Questions! If Jerry is sleeping at the table does he need to be woken up to eat? Seriously. What would happen if he skipped a meal? Would he die? I hardly think so. And isn't he in the process of a terminal disease anyway? What would happen if he slept through the afternoon snack? Do we wake a sleeping baby to give him a cookie? Jerry was never a snacker anyway. Never ate goldfish. And if he actually DID snack...it was a bag of peanuts that he shelled while watching football. I'm so confused!
Recently, Jerry was peacefully sleeping on my shoulder and we were enjoying a nice quiet moment together. A staff member courteously came by and tried to wake him to offer him a cookie. "Jerry! Jerry! Wanna a cookie?" After several attempts and a bit of a "kind scowl" from me....she shrugged her shoulders, gave up and walked away....ate the cookie herself instead.
Sometimes, I just don't understand these things.
Today was an opportune day to visit with one of Jerry's staff.
For those staffers who answer this call of service, I admire you. It's such a thankless job and NOT a pretty job. Many of you hold down two jobs and take care of your families...some are going to school. I honestly don't know how you do it. It is the utmost of compassion and service.
I was at the end of a sweet time with Jerry, walking arm in arm and hugging. He seemed happy. As we walked, I noticed one of the staff setting the tables up in the dining room. I love chatting with those beautiful people. She greeted us with a warm smile as we entered the room. I commented about Jerry's new haircut and how he was always such a heart throb and how I always had to keep him under guard. I could tell he heard me because he smiled when I mentioned his "bedroom" eyes. That, although he was a wild man in his youth, he always knew his limits because of his foundation in God. He had a great respect for the elderly and such compassionate for the down trodden..... a real softie. ..and when it came to protecting his family or protecting justice.... he was a roaring lion not to be crossed.
I commented on how Jerry's skin was like a smooth baby's bottom today. He does not have ONE wrinkle. Not one! Not even those little crows feet. SO NOT FAIR! Anyway, one comment led to another while we were talking about caring for Jerry's skin. She mentioned how at the nursing home (her second job) she encourages people to moisturize and apply lotion to the skin of her patients. She said, "Think about it, Miss Sue, we all put lotion on after we bathe. Dry skin hurts." For Jerry, applying Vasoline after he is shaved seems to help.
As she now began to sweep the floor, her eyes began to tear up as we continued to talk. She mentioned one of her patients who passed away last week. Against her better judgement, she had become so attached. "Miss Sue. So many family members do not come see their loved ones. WE become their family." She hears comments like, "Well, she doesn't even know me. Why should I come?" or "She never says anything. I don't know what to say." So the family members just quit coming. She said, "I would just put lotion on her feet and legs and talk to her. I was all she knew. I told her if she didn't want to get up and eat...it was ok. She could just rest." "Miss Sue, it just hurt so bad. I don't necessarily make a difference in their lives but....caring for these people....it just makes such a difference in my life."
Oh. If we could all learn from this! What a better world this would be. For this staffer and many others, who's lives are impacted so deeply. I thank you. I thank you, from the bottom of my heart, for how you care for Jerry. I thank you for how you care for those who are alone.
English Standard Version (ESV)
31 “When the Son of Man comes in his glory, and all the angels with him, then he will sit on his glorious throne.32 Before him will be gathered all the nations, and he will separate people one from another as a shepherd separates the sheep from the goats. 33 And he will place the sheep on his right, but the goats on the left. 34 Thenthe King will say to those on his right, ‘Come, you who are blessed by my Father, inherit the kingdom prepared for you from the foundation of the world. 35 For I was hungry and you gave me food, I was thirsty and you gave me drink, I was a stranger and you welcomed me, 36 I was naked and you clothed me, I was sick and you visited me,I was in prison and you came to me.’ 37 Then the righteous will answer him, saying, ‘Lord, when did we see you hungry and feed you, or thirsty and give you drink? 38 And when did we see you a stranger and welcome you, or naked and clothe you? 39 And when did we see you sick or in prison and visit you?’ 40 And the King will answer them, ‘Truly, I say to you, as you did it to one of the least of these my brothers,[a] you did it to me.’
Guilt. It's nothing but a tool to destroy you. Caregivers....we are all doing the best we can. Don't let the guilts rob you of your joy.
This "being alone" thing has been quite a transition. You might say we both have changed. We've had 42 years of the most rewarding life together as married best friends. Our anniversary is in a couple of weeks. From having Jerry at home for 11 years as an Alzheimer caregiver to being a "distant" caregiver the last three years while he is in his new home...a lot has happened.
So many people lose their love ones suddenly. Shocked! Here, alive and well today. Gone in a second. No time to say goodbye. No time to get those regrets settled. The "Im sorry" does not have time to be said. The Alzheimer journey is different, however. We lose our loved ones "one day at a time." In many ways, I am thankful for that. Jerry and I got to make every minute count! We had the opportunity to appreciate what was really important. We got to say, "I'm sorry."
Today, while at the gym, however, the "guilt monster" crept into my head and began to roam around. I was doing those awful Pilates ab thingies....you know those corkscrews where you hold your legs out and circle them around. ..then do again in reverse! For some reason my grunts took me back to when Jerry and I got on this big health kick about 20 years ago. SERIOUSLY! 20 years! (I suppose I was always athletic...but never had the commitment to do anything with it. LAZY!) Jerry was all gung ho. Me, on the other hand, stuck it out for a couple of months...then considered it a waste of money. After all, he made the money but I managed it. $100 per month was a lot when you have three mouths to feed and you're NOT using the gym anymore. Besides, he travelled all the time. (was in airplanes all the time. wonder if all that cabin pressure brought on early dementia? Hmm. we'll save that for another blog post.)
Moving right along. I killed Jerry's joy. What an encourager I was. NOT! Today, I envisioned his skinny self, sweaty, chest all puffed out walking across the gym floor with a big grin across his face. He thought he was a total stud. (He was!) When that vision popped into my head, I forgot all about those painful leg lifts I was doing and started feeling terribly guilty. Look where we are now. I'M AT THE GYM doing what he wanted to do. HE IS IN A HOME. Oh, the guilt.
Another time, Jerry actually acquired a boat. This was about the same time as the gym membership. We had so much family fun on that boat. There were truly some hysterical moments when he tossed me the keys to the boat while I was in the water. Really? Naturally, the keys went down to the bottom of the lake. Needless to say, we got those floatie things after that. (not for me...for the keys). That boat, after a while, became a money pit! It was his total project and his checkbook stayed open! Well, you know me and the money. THAT BOAT HAD TO GO! : ( There....I did it again. Killed his joy! There's that guilt again!
So, why am I confessing all this to you? These little things are not exactly monumental. But GUILT is. It will eat at you until there is nothing left of you. I suppose I'm telling you this so you won't make the same mistakes. Reconcile while you can. Say I'm sorry. Better yet....be thoughtful enough NOT to rob your loved one of their joy. Love selflessly. Practice patience. Do unto others as you would have them do unto you. Love your neighbor as you love your self. Isn't there something in the Bible about that? Think of your life without them (just for a brief second.) Live a life of no regrets. I'm headed over to say I'm sorry right now. Hope he still hears me.
During the last few visits, Jerry has had good days, meaning he has been fairly alert, with his eyes open, and walking around the unit. Today, I was standing by the nurse's station when he walked through the door. He came toward me and stood. I held my arms out. He slowly and just for a few inches, moved his arms toward me. I'm not sure he knew me but he is always willing to hug and be hugged.....by anyone.
Lunch was not ready yet, so we walked around the unit for a few minutes. There was a foggy mist hovering overhead and the back door was propped open, so we walked outside. You could hear the sprinkle on the trees. There's a figure eight sidewalk in the little fenced in back yard so we wandered around the track together. He would only step a few steps at the time, but our walk was pleasant with a lot of gazing around. Looking into his eyes, I asked, "Do you know who I am?" For some reason I need to know these things. Don't know why...because he really doesn't..and it really doesn't matter. Anyway, I said, "Jerry. I'm Sue." He didn't respond accept with a puzzled look. I said, "I'm Sue. I'm your wife." Then, he said, "My wife?" and looked at me. "Yes. I'm the one who loves you more than anyone on this earth." Then....he faded back out.
It's ok. I'm use to it. Sort of like that scene in the movie, the Notebook, where James Garner had prepared a romantic candlelit dinner for Gena Rowland. He read to her from the notebook and she seemed to come alive for a brief second. He fell completely in love with her again, wept and took her in his arms and then it happened. She became lost and fearful and the staff had to take her away. He was devastated. That scene was so real!
Those days are long gone for Jerry and I. Those days were years ago. Those emotional wrenches of pain do not press tight anymore. I know Jerry doesn't REALLY know me, nor does he have any memories left in him. I've accepted that. So when there is a brief second of something....I take it with a grain of salt, enjoy it, then we both move on.
SO that was our good day today.
Here's my question, however. What is a good day? My idea of a good day is when I see Jerry free of pain and secure in a happy little peace. That is the way he is where he lives. My idea of a good day is NOT whether he knows me or not. It is NOT whether he eats or not. It is NOT whether he is alert. The GOOD DAYS cannot depend on those things because they will eventually go. Yes...it's good when he does those things...but the GOOD is not only that. The GOOD is that he is secure and at peace, whether he is sleeping or wandering around, eating or not. A GOOD day is completing another day with no mishaps, falls, or injuries. A GOOD day is when he is gently put to bed at night and sleeps like a baby. SO...so far, most all of our days are good days.
I've had the pleasure of meeting with two friends who've placed their wives in a facility in recent months. I could see the stress in their eyes. I could see the loss, the confusion, the bewilderment of their years of caring for their wives and having to give it up. Underneath their pleasantries and their courage, I could see their pain.
One topic we shared was the sadness, madness and bewilderment of the fact that their close family members have never come to see their wives. Such wounds added on top of their already unbearable loss..well..there are no words for it. These were people who were close back in the day..... when they were healthy. So many loved ones use the excuse..."I just couldn't stand to see her that way." or "it would hurt me so much to see her like that." or "I don't know what to say."
Grr! Hogwash! Get over it! It's not about you! This is no time for selfishness. It's about the loved one who needs you. People act as if the Alzheimer patient is already dead. But what they don't realize is that THEY ARE NOT! Jerry is still here. Betty and Mary Beth are still here. Allison still cries and then she laughs. YES, they still have names and they are HERE! They are not well...now is when we need you. It's still not over and, although we are becoming accustomed to it, our hearts are still filled with sadness, we are observant of meaningful relationships, those who have stuck by us, and aware of those who have not.
So, what do we do with all of this? How do we respond to the disappointment from people we thought cared? I suppose, after pondering a bit, I've learned to let it go...or at least stuff it down so deep that I don't think about it anymore. There was a time that I really resented it. After all they once were "best friends" "brothers" "sisters"....Jerry use to ask about them. But that opportunity for a relationship or any closure is gone. I don't hold resentment anymore. We've moved on. How could they possibly understand? How could I hold them to unrealistic standards if they just don't get it. Only those who have been on this journey can understand.
When Jesus was on that cross, being tortured, he cried out, "Father forgive them, for they know not what they do."
I am a PURE human! I have very human frailties and I struggle with this...as many, many Alzheimer loved ones do.....but forgiveness is the only answer. If I let myself dwell on my resentment or disappointment, it takes away whatever joy I can find. Forgiveness, is not necessarily for the recipient....it is for the forgiver. To forgive allows us to "put the transgression aside", allow God to handle it, and let us move onto more positive moments. Joyous moments that would be robbed if they were spent in bitterness.
I hope this helps you newbies and oldies. We are in this for the long haul so we need our positive and beautiful moments. Carry on.
Just tidbits of information for those of you who have loved ones in a facility.
I've found that when providing supplies, such as shampoo, razors, toothpaste, undergarments (diapers), it's best to send them in limited supply. Even though everything is labeled, sometimes supplies get "moved" to another room. Diapers disappear more quickly, for example. Think about it. If a resident goes through 2 diapers per shift, that makes 6 in one day. Multiply by 7, that's 42 per week. Times 4, that is 168 per month. 16 Depends at $20, that's $210 per month. (on top of the $4500 that you are already spending on the facility. Yikes!) Those little things are made of gold (not to be confused with yellow, ha.) So, hand them out with caution.
Clothes are good to refresh every season. Even though the temperature is constant, it's still nice to have a change of seasons...colors..and shoes from time to time. However, too many clothes just end up being wadded up and not worn. At Jerry's facility, the laundry is done daily.
When Jerry first went into the facility, I kept a supply of Oreos in those mini packs, a can of peanuts, and some snickers in his drawer. We don't do that anymore. We also had CD's of his favorite things, like: Carolina basketball, Alabama football and bluegrass music for his room. He rarely stayed in his room, however, so eventually he didn't even need that. I brought the TV home, because he stays in the main activity room and sits with his new friends.
Hmm. What else? There are a few things that I try to do when visiting. Since there really isn't much two way conversation, sometimes it's difficult to keep coming up with things to say. Reading and looking at magazines is good. When the weather is cooperating, we sit on the patio with the other residents. Even though Jerry doesn't speak, it still feels like he is included when we all sit an rock on the front porch together...like people use to do in the good ole days. Sometimes I bring a small speaker to plug into my iPhone and play music. Everyone seems to like that and sometimes Jerry's foot begins to tap. (or at least it use to.) For Jerry, a ball use to get some reaction: football, or big rubber ball. Last but not least.. pets always bring smiles. Montana comes to visit at least once a month and sometimes sits in Jerry's lap whether she likes it or not.
Hang in there, my friends.
Some may ask....how you celebrate New Years in "the home". Well, today was a perfect example.
Figuring a New Years Eve party was not exactly in my agenda for the day, I drove up to help out at Jerry's place. When I arrived, there were 8 lovely Alzheimer patients seated around a table in the center of the room. There was Sherri, trying to get them all excited about a New Years celebration. Some were bright eyed, some were "sleeping", some were happily in their own little world.
The table was all covered with a New Years celebration table cloth and curly ribbon was strewn across it. Metallic gold paper plates were placed around and a balloon was floating in the air. Jerry was "slumbering." Sherri asked me to pour the "champagne" (sparkling grape juice) and pass out the grapes while she explained the meaning of the celebration. We passed out the champaign, she and I blew on the little "blow out" thingies, and we danced around the room shouting "woo-hoo!".
Now, none of the patients knew what in the world was going on, but Sherri and I had a great time. We laughed our silly heads off, which made them smile. You could feel the happiness in the room. In fact, we even saw the staff dancing out in the hall! It didn't matter if the patients understood or not. What mattered was that they were raising their eyebrows and smiling. Some were even laughing. (for a second or two.)
Sherri started trying to explain about New Years resolutions. Most had no idea what those were. But, they went along with it. One responded, "Why?" Another said, "some do...some don't". Many sat in silence. "Pick me, pick me" I said. She picked me and I said, "I'm moving to France!" Suddenly, Jerry jumped in his chair. (not literally) The movement was quick and gone but he obviously heard something that quickened him in response. Talk about funny. It was!
So that's why you celebrate in the home. To offer a few minutes of happiness. It works. Sometimes.
HAPPY NEW YEARS EVERYONE from the home.
laugh |laf|verb [ no obj. ]make the spontaneous sounds and movements of the face and body that are the instinctive expressions of lively amusement.
Have you ever laughed so hard that you cried? Better yet, have you ever cried so hard with a friend that you broke into laughter? What happened?
Laughter seems to relieve the tensions of stress, unlatch the chains of depression, and re-energize the last thread of exhaustion. There's nothing like a good dose of the PBS programs Car Talk or Wait! Wait! Don't Tell Me to make you laugh...or better yet, visualizing Jennifer Lawrence falling up those steps at the Oscars in that gigantic dress.
Today Jerry was sleeping at the lunch table. Mary Beth and Jerry are both in their 60's and are seated together. The other residents are in their 80's, 90's, 100's. Both, Jerry and Mary Beth are unable to speak more than an occasional word from time to time. Mary Beth is still able to eat with her utensils and usually cleans her plate. "Hi, Mary Beth!" I said. With her delightful eyes and raised eyebrows she sputtered a smile back at me. Jerry, dressed in his maroon sweatshirt, still was sleeping with his head slightly tilted back and his mouth dropped open. ...sort of like someone in the airplane seat next to you, head tilted back, mouth dropped open, snoring....accept Jerry was not snoring. You wonder whether to wake them up or not.
Anyway, lunch was being passed out to all the residents. Most of the inmates (oops. I meant residents) were eating quite nicely, some with fingers, some being spoon fed. Jerry continued to sleep in his seat. Sitting next to Jerry, I chatted with the other residents and the staff and said, "This handsome Jerry was a mega salesman back in his day. He could sell ice to an Eskimo. Right Jerry?" The staff smiled. "In fact, he'd have them building fires in the snow just so they would see that they needed ice. Right Jerry? Isn't that the way it was?" I could see Jerry out of the corner of my eye, still sleeping, "Right Jerry?" All of a sudden he opened his eyes and, with a slight smile across his face, he leaned forward gingerly reached to pick up a glass of milk. I said, "Yeah, Jerry. Get that gin and tonic. Back in the day, when we'd fly to those sales conventions those flight attendants would serve us gin and tonics with warm mixed nuts. Look at those warm nuts, Jerry." When I said "warm nuts" he reached over to his plate and picked up his chicken sandwich. Doesn't that beat all! And he didn't even know the difference. We all howled laughing...not AT Jerry but FOR Jerry. .. FOR ALL OF US!
You see, whether the resident is aware or not, laughter sets the tone. It determines whether its a depressing place, a somber place, or a happy place. It seems to me a happy place would be a better place to live (or die).
Next time I'm going to try to remember the place where we stayed in downtown San Francisco while we were on a business trip. It's the one where Queen Elizabeth stayed. I remember how we'd have our G/T street side while we talked and people watched during cocktail hour.
So, try it. Before you visit next time, find a memory or something funny to get you in the mood. Make yourself laugh, some how, some way. Watch Alex Baldwin in it's Complicated or Jack Nicholson in Something's Gotta Give. Your loved one will thank you for it.......or maybe not.