Guilt Free Caregiving-an Alzheimer Journey by Sue Scoggins
Just thinkin'
Just thinking...AGAIN!
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.
Forgiveness-an alzheimer journey by Sue Scoggins
There once was a time when he was healthy.
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.
Spiritual
Since so many have commented on how candid this blog is..I feel that I have to share this. It's what keeps me going.
Wednesday, the social director from Hospice called and regretfully told me that they would have to discontinue services again. Jerry danced with the nurse! Three months ago, he could hardly stand. The Hospice staff have grown attached and tried their best to keep him on services but he has stabilized again. What does a caregiver do with that information? How does a caregiver of 14 years cope with knowing that this will continue. Do I feel happy? Do I feel discouraged and exhausted? Do I panic over the financial devastation again? Do I feel guilty? Do I feel comfort that I don’t have to face a funeral quite yet? All the compartments in my little brain are so jumbled and confused.
Many of you will not understand these things. How could you? I’m being honest. The long period of grieving sometimes gets the best of me. I CAN’T BELIEVE I AM SAYING THESE THINGS “in public”. I am very much “in love” with my dearest Jerry. He is the love of my life and has been since I was 17 years old. We made a vow to love, honor and obey. Til death do us part. I wonder in mind ...This beautiful man ....oh...what is going on here....where did you go? When will you be freed from the shackles of this disease? Your beautiful eyes are still here and you still light up when you see me. The road is long.
I’ve just come off of a whirlwind month of art events, a new grand baby girl and a trip to New York with my favorite son. Life was exhilarating and very far away from Alzheimer world. Now, I’m back and it is quite an adjustment to come back to my empty house and isolated beach. As beautiful as it is....it is a place of solitude and can be dangerously depressing if I’m not careful.
SO...here’s what happened to me this morning. When the sun came up my eyes popped open as if calling me out to the beach. I put on my jogging shoes, downed a cup of coffee, and called the dog. Montana was so excited when she saw me pick up her ball and chucker. Today, I grabbed my music and put on my Pandora gospel station....a little meditation music. It began with Fernado Ortega and his beautiful piano...no words. God drew me so near. It was as if He and I were all alone on this magnificent beach. As the music took me away, I prayed my questions out to the Lord. What is going on? What do I do? Where do I go? Then a song by Cece Winans came on ....Alabaster Box. I didn’t really know who was singing but I could hear the words
And I've come to pour
My praise on Him
Like oil from Mary's alabaster box
Don't be angry if I wash his feet with my tears
And dry them with my hair (my hair)
You weren't there the night Jesus found me
You did not feel what I felt
When He wrapped his loving arms around me and
You don't know the cost of the oil
Oh, you don't know the cost of my praise
You don't know the cost of the oil
In my alabaster box
Mary adored her Jesus. I understood her grief and her sorrow. I understood her praise as she washed his feet with her oil from her alabaster box. As a visual person, I found myself “out of myself” and envisioning this God, unfathomable, and how how blessed I am to be his. I relished in that time as the waves rolled over my feet, the silver sunlight glistened on each crest as it moved onto the shore and the birds skimmed in precision over the surface.
As the music ended, I realized that no earthly condition can rob me of this. Nor can anything match up to it. The piano, again, began to play and my heart became light but full with a sweet sense of contentment that I am right where God wants me to be. It's was as if God said, "Be still and know that I am God. Listen. Walk with me. I'm here."
Perhaps this is another gift...a bit more time to love and be loved in Alzheimer world. There are still lessons to be learned. It is good.
As I made my way back across the sand my time of worship was coming to an end. I had been so moved by this instrumental, with no words being put into my head, that I pulled my phone out of my pocket to see what was playing. There on the screen read, Til Death Do Us Part by Steven C.
Just wanted to share.
Grace
Heartland. The road to New Bern.
In the grand scheme of things.......GRACE.
Have you ever felt confused? Have you ever had a nagging pain in your neck or your back? Or have you ever tried to keep a migraine at bay?
Most of us have experienced all of those things. Think about it. When you are trying to keep a migraine at bay...it's all you can do to smile. If your back is giving you nagging pain, it's all you can do to stay upright. When you've had a confused moment...doesn't it kind of set you back a notch or two? Don't you question yourself? I do. I wonder if I'm losing it. I tell myself to slow down, keep calm and think things through. It's totally self absorbing.
I can imagine this is the way it is in the beginning to moderate stages of Alzheimer's Disease or dementia. The fact that you are aware that you are "losing it"...just the awareness...must be totally mind consuming. "No. I'm going to beat this. I'm NOT going to get confused. I'm going to keep it together." I remember Jerry saying those things. I know he tried so hard for as long as he could. It was so difficult....then add to it the self doubt, discouragement and depression that underlies it all knowing you're not who you once were. AND, fighting off knowing what lies ahead. It's unfathomably difficult.
Looking back, I regret times when my demands were too high. I regret the times I expected him to put the chair back under the table or close the cabinet doors and drawers. How much was the disease and how much were these things just laziness? I regret the frustrations that got the best of me when he just "didn't get it". Why he would let the dog in, then out, then in again. I promise I'm not beating myself up over it. How could I have known that it was a part of the disease. What did I know? I didn't know a soul with Alzheimer's disease. Every day was a new learning experience.
For all you newbies, remember the word GRACE. GRACE, emblazon it on the back of your hand so that you are reminded every day to give your loved one grace. In those AWARE days, when they know they are losing it....they need grace.....they need unconditional love and mercy. They are trying. Even when they are grumpy and negative. Even when they slap you on the butt in public. Even when they repeat themselves among friends and say things totally unrelated to the topic of conversation. They are trying to keep it together. They are trying to be normal. Whah!
Dear caregivers, I know it's hard. It is the hardest task you will ever have...to care for this loved one. But, you can do it. With God's grace and strength YOU CAN DO THIS. Our loved ones need us. This is our mission for now. The rewards will be great so keep it up. WE CAN DO THIS.
Tailgating
If you ever have to considering a facility for your loved one, remember to check out the activity director. "Activity director?" you say..."what about the safety, staff, the cleanliness, the urine smell?" Well, those are a given. Of course, it's imperative that our loved ones have a safe and secure environment, with a well trained staff, that is spotless with no hint of urine smell. That's what we want. However....don't forget the activity director. Our girls....I just don't know how they do it. They truly love their job and it shows!
When I drove up into the parking lot yesterday, a pick up truck was backed up to the entrance of Jerry's facility. Draped from it were football banners and the tailgate was loaded down with nachos and chicken wings. We were having a tailgate party!
It was perfect football weather, clear, sunny and cold. Every resident was dressed up in their favorite team attire. For those who didn't have anything to wear, team shirts were provided. Tables and chairs were circling a game of corn hole and there was lots of cheering going on.
The great thing about where Jerry lives is the fact that the residents in the memory care unit are incorporated into the activities of the healthier assisted living folks. Remember, since Jerry is so much younger than the rest of the "others" (the healthy elders), he is treated royally by all of them. They are endeared to him and think of him as their own.
When I approached the "stadium" I could see Jerry sitting at a table with his buddies. He had no idea what was going on, but being surrounded by all that positive energy gave him a peaceful and happy countenance. To my amazement, he saw me and began to move. (That always amazes me that he knows me.) I went over to lift him out of his chair and walk him into the sunshine closer to the corn hole game. Some of those folks can really toss a bean bag!
I've found it a bit easer when I visit Jerry during an upbeat activity. When it's just me, we walk and I talk. But I will admit that sometimes I'm at a loss for words..especially when there is no response. So, it's nice to have energy and input from other people around you. The activities provide stimulation and a chance to get out of the unit. The spice to their day and helps avoid each day from becoming another Ground Hog Day. Last week was a Veterans day celebration. Today..it was a tailgate party. Tomorrow night it will be a country band. Next week they'll have church on Monday and maybe a "mocktail" party or a field trip the next day.
Activity directors! Thank you for all you do!
Those Vows
Scrambling to get my shoes on, I snuck into a wedding, late, this afternoon and sat in the balcony. The view from the balcony, overlooking the wedding party and the guest, conjured up lots of reflection and I found myself smiling with the sweetness of the moment. Such a young couple, just starting out, the bride all dressed in white and the groom all dressed in his tuxedo with pink tie and boutonniere. Such naiveté as they entered into the promise of their lives together.
Unless we're fortune tellers, most of us don't know what lies ahead. We have no idea of the promises that we are making when making those wedding vows. We enter into this thing called marriage, as idealists. But, what about when the outer beauty and perfection wear off? What about when the days are numbered or one gets grievously ill. What about when the "cuteness" wears off and we have to wipe bottoms or spoon feed the other person? The wedding vow is so starry eyed and romantic at the time it's being spoken...but what about later on down the road?
Very vintage! Hippy days.
I am so thankful that Jerry and I didn't have big grandiose ideas of marriage. I suppose we really didn't think too far ahead. We didn't have a 5 year plan. We just made the commitment and never looked back. This was the same example set by both of our parents, for which I am so grateful. Maybe I had more romanticized the idea but Jerry was more of a realist. In reality we were, and still are, life partners more than anything else. Whatever life threw at us..we would tackle it together. That's a pretty serious commitment!! I couldn't help but get a tear in my eye when this couple said their wedding vows.
So, here we are. Now. 43 years later.
Earlier, when I drove into the parking lot the shuttle bus was in front of the facility. The unit was going on a field trip and Jerry was on board. I parked the car and walked to the front of the bus and watched him as I came around front. Once into clear view, our eyes connected and he raised his arms into the air...as if to say, "hallelujah". What sweetness! His eyes are still glazed but so sweet and vulnerable. Like a new born baby. (I just had one of those...will write about that later.)
Jerry was eager to get up from his seat and we moved the resident who was next to him so he could get out. I took his hands and as he rose, ours eyes locked. Honestly, I don't know if he really knows who I am...but he knows I am SOMEONE. Someone who is important to him. Sniff!
There is no understanding this or explaining this to a newly wed. No possible way of understanding. I could never have understood this kind of love connection either, if we had not stuck it out.
The activity director and I decided that Jerry would be just as happy going with me for the day. So we shuffled over to the car. Jerry's long arms and legs can be quite stiff and resistant so it is a bit of a challenge to get him into the front seat of a car. It's like folding up a piece of Styrofoam...bend it until it breaks...accept I don't want him to break. And the whole while that I'm trying to manipulate his body, he's looking perplexed.
Once he was in the car, I noticed that he was wearing someone else's old sweatshirt and that his pants had a hole in the crotch. Honestly, I've been a bit neglectful in getting him new clothes. So it was time. TJMaxx was around the corner, so I said, "Self. What the heck. Take Jerry in and get him some new jeans.." So what if people stare.
Now this is the first time I've taken Jerry into a store in at least a year. In fact, I rarely take him off campus. His state has been so fragile and I haven't wanted to put him in any confusion. But, actually, this worked today. He's actually so unaware that he wasn't confused at all. I held his hands onto the cart and talked to him the entire time. I'd hold a shirt up in front of his face and talk, as if he could understand. He couldn't. I'd place jeans up to his waist as if he knew what I was doing. He didn't. I bought him new jeans. A new shirt or two. New jammie bottoms and long sleeved t-shirts to warm up his freezing arms. I kept my arm wrapped around his skinny waist and we shuffled around for about 15 minutes.
I wouldn't trade that time for anything. Short but beautiful. The kind of time that a wedding vow cannot fathom. But a good time. A reward that can only be experienced after a long life together.
Little Miracles
It's 6am and my mind is swirling with things to say. There are so many things to be thankful for. I've just come off of a month long art event and Alzheimer fundraiser and my thoughts are reeling. I am so grateful. So often I think this thing called "Alzheimer's" is catching. Many times I find myself calling people by the wrong name, pricing my art inconsistently, forgetting what art is where. It takes me a moment to collect and organize my thoughts when I'm put under pressure at an art event. Sometimes I'm "spot on", sometimes I'm the poster child for Attention Deficit Disorder. It's embarrassing. It's a miracle that I can find my head sometimes!
I see little miracles all the time. I guess it's an attitude....which is a miracle in itself! When I arrived at Jerry's place to visit yesterday, I could hear singing. The unit was quiet and I could see Jerry sitting, asleep, on the sofa in the living room. All the residents were sitting around the room and the aide was in the corner singing ..."Daisy ..Daisy... Give me your answer do. I'm half crazy over the love of you..." A few of the ladies were singing with her. Let's call them miracles, too. I began singing with them, waltzed on over next to Jerry and put my arm around his shoulder. That was a miracle...the fact that I didn't cry. Honestly, I really didn't even try to talk to him. I just sat there like the rest of them, singing, and chatting with the aide and the other residents. It was like sitting around the living room after a Sunday meal. Very relaxed, warm and fuzzy. ..another miracle.
Like in the last post, sometimes the only thing that is needed is just to "be". To press up against him. To feel his soft sleeve and to hold his hand. That is a miracle.
I suppose I'm a person who does a lot of thinking. My dad was like that. He was slow to speak, read his Bible, and prayed for those who were laid on his heart. As a child I use to get frustrated with him. I'd call him "the thinker", after the bronze sculpture by Auguste Rodin, The Thinker.
It's hard to think this was our future. Who would have thought that in our 50's Jerry and I would end up like this? Who would have thought that the bright, magnetic, type "A" would end up so frail and in this state of non responsiveness? Who would have thought that his quiet, introverted bride would become an artist and extrovert. Now, THAT WAS A MIRACLE! To have seen this future before it came to be would have been "unthinkable". Yet, with each passing day, I see the future as not mine. It is a walk. An opportunity. So, without looking too far ahead, I follow this lamp before my feet, knowing God has gone before me. I see miracles all the time...spiritual miracles and I'm overwhelmed at the treasures I've discovered.
Oh yeah. We are about to have our sixth grandchild. Our first baby girl will be born any day now. Now, THAT IS A MIRACLE! So, for you newbies out there.....you will make it. YOU ARE A MIRACLE TOO!
Happy Hour, Way Too Happy - An Alzheimer Journey by Sue Scoggins
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.
Real
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.
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.
Re-energized for Year Fourteen - An Alzheimer Journey by Susan Scoggins
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.
The Good Book - An Alzheimer Journey by Sue Scoggins
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.
Jerry’s Back - An Alzheimer Journey by Sue Scoggins
Jerry. Two years ago dancing with Katie while we were still at home. Jerry loves to dance.
He rounded the corner from the back room and saw me standing at the nurses station. In that second, he picked up his step. My face lit up in a smile and I ran to hug and hold him. He felt so soft in his yellow Nautica sweatshirt. Like a bony pillow.
Our hospice social worker was there to pick up some paperwork. I’ll miss her, but she reassured me, that if I ever felt Jerry was declining rapidly, not to hesitate to call her for a reevaluation. The three of us walked back to Jerry’s room. Jerry never let go of my hand and kept patting my shoulder. He knew me today. The social worker explained that the reason he did not recertify for hospice services was that, in spite of his mental decline, his physical decline was not declining enough. Certain criteria have to be met. His weight has stabilized and he is still ambulatory. His vital signs are still good and there has been only one UTI.
Our visit was good, in fact, she asked me for insight in counseling people who’s spouses don’t recognize them. How do I cope? I told her it was really heart wrenching, at first, when he began to not know me. I told her that I missed him so much more and felt that if I visited more often, he’d remember me again. It took a while for me to adjust, but now I make a joke of it. I try to make it light and say things like, “Who do you think I am? Your girlfriend?” Or, “You just said you loved me. Who’d you think you were saying that to?” It usually gets a sheepish smile out of him and that is much more important than the fact that he doesn’t know me.
Today, however, we DID connect. He looked so dad-gum handsome. His hair is long, now, like a retired rock star. It was clean and had a little curl on the ends. It was a mild fall day and we spent our time sitting on the front porch with some of the other residents from the independent living section. They all know Jerry and are so, so nice to him. Next time, I told them, I’d bring some music so we can dance to Duke of Earl. (That’s Jerry’s favorite oldie.)
Next up......Frank Sinatra and Bing Crosby.
Striped Pumpkins - An Alzheimer Journey by Susan Scoggins
Striped pumpkins. Today, it was my privilege to take my love for art to the assisted living facility where Jerry lives. In the morning, I work with the residents in the Alzheimer unit. In the afternoon, I work with the residents in the assisted living section.
When I first began this endeavor, I didn’t know what to expect. Honestly, I do not expect anything. That’s exactly what makes the time so exciting. If I had my own unrealistic, preconceived expectations I probably would get frustrated. I mean when I brought in pumpkins to paint, one of the residents didn’t want to participate because “That’s not what you do with pumpkins. That’s not even big enough to make a pie!” I made light of the comment and passed out a couple of pumpkins large and small. These would be corporate pumpkins where all the residents would contribute their artistic skills.
Some of the residents can hardly hold a brush and if they can, they don’t know what to do with it. But once, I got the brush loaded and placed in their hand, I moved it once or twice and away they went. The session only lasted about 30 minutes...but it was 30 minutes of smiles.
These smiles may not be remembered for long, but it is the smile of the moment and the more moments of smiles we can have the better.
We Have a New Roomie - An Alzheimer Journey by Sue Scoggins
It was Sunday and a beautiful fall day. When I arrived at Jerry’s place, I could see him in the main room where most of the residents “rest” watching tv. They were watching Andy Griffith. I could see Jerry actually leaning forward and looking up, as if he was actually watching good ole Andy. Some of the other residents expect their greeting hug when I walk in the room. A squeeze makes their day. Jerry didn’t exactly know who I was at first. However, I took him by the hand and walked him down the hall to his room. When I got there I noticed that there was a new bed, pictures on the wall, another lounge chair and a BIG tv. He had a new roommate.
It was exciting. It looked like his new roomie might be a good match. Jerry and I walked on out to the front porch where I had noticed a group of folks sitting in rocking chairs. What a beautiful family! His new roomie, I’ll call him Roy, was sitting in a wheel chair next to his endearing daughter and her husband. I could see the angst of this new transition by the red rimmed eyes. But, we all stayed upbeat, talked about the country western band that comes once a month, and how Roy loves old movies. I could see how Roy was trying to be brave......his face would begin to reveal his cry..... he wanted to go home. I’ve seen that face before...many times. Yet, he knew he had to be brave for his family’s sake. He was. Jerry still is.
Jerry’s doggie, Montana, was waiting in the back of the car so we ventured over to give her a pat on the head. The cool fall day made it possible for her to come for her doggie visit. By this time, Jerry knew who we both were. (I think.) I put the leash around Jerry’s wrist and threaded it through her legs so she wouldn’t pull him and off we went to circle the parking lot. As long as Jerry is able, we’ll go for a “tour” around the area. (This photo above was taken 4 years ago.) Fresh air and outdoors is in short supply when you are in a locked memory care unit. Not that they don’t do the their best to keep the resident’s active and get them out....still, it’s not the same as being able to get out whenever you want. None of these alzheimer patients are able to do anything without assistance. The residents up front in the assisted living section are able to sit out front whenever they want. And they do!
Back at the unit, Roy was taking a nap, and the each family member was saying their goodbyes. Sons, daughters, in-laws, and his granddaughter came out one by one. All greeted Jerry with empathy and infectious smiles. Jerry’s face lit up with a smile as if he belonged to them. For them, it was a heavy hearted day but in their heavy hearted ness, they were able to be uplifting. We’ll be in this together for a long time. New friends. A new roomie. A gold nugget !
Survival 1301 - An Alzheimer Journey by Susan Scoggins
One year ago this month, I bought a bike. The reason this is important is that one of the keys to caregiver success is to exercise.
Trust me, this is not to pump me up or give me “kudos”. This is for you! So many of the caregivers that I meet are so strong and resilient. I’ve often wondered how they remain so strong and not so seemingly emotional as I am. Honestly, I am a female.....an emotional one.....one who wears her emotions on her shoulder and who shares a lot with others. No pretense here. I am an open book.
Last July, my lower back gave out. Jerry had been in his new home for about 8 months. Each day was a struggle for me, but my game face remained on. Unfortunately, my body was falling apart day by day. When the back went out, I remained immobile and in excruciating pain for weeks. I was faced with a decision. Either crawl under a rock and die.....or pull myself together and get stronger.
Money is rather tight when memory care facilities are a part of your monthly bills. So, I really was having a hard time with what to do. I frequented our local bike shop which is only a 2 mile walk from my house. The bikes were so exciting to look at.....my pipe dream was to be the female version of Lance Armstrong. I stewed over it for about a week, when I got a call from my gallery. Henrietta, my ostrich sold! Yay! It was as if she was saying, “Quit procrastinating! Go buy that bike!” The thrill of the sale prompted me to run right over and collect that money. Shortly after that I skipped into the bike shop and paid cash for that bike.
That was the beginning of getting stronger. The sense of accomplishment by adding on more miles each week gave me a revived energy and I soon found myself looking forward in a positive way. My attitude in dealing with Jerry became stronger both physically and emotionally. Not that there haven’t been set backs. After all, it does rain now and then. But I am here, one year later, to say that my outlook is different, my body is thirty pounds lighter and much healthier. Tour de France, here I come!
Take it from me, we need this to survive and thrive. Thirteen years and still counting with my Jerry dearest. All the more reason to be strong. It’s what our loved ones would have wanted.
The Diagnosis. Now What? - An Alzheimer Journey by Susan Scoggins
In the past two weeks, I have run across four new families who are facing the new diagnosis of dementia or Alzheimer disease. Most have been noticing symptoms for a while, but the symptoms finally have gotten bad enough to seek a phyisician’s opinion. The Diagnosis. Now what?
Some people wonder what’s the point of getting a diagnosis? There’s not a cure anyway. But, having a diagnosis atleast let’s you know what you are dealing with as a new caregiver. Also, the patient usually is aware that something is happening. Knowing the diagnosis is the beginning of getting the right tools to cope.
When we first heard the diagnosis we were in shock. There were no words said. Just silence. Soon, the overwhelming emotions began swirl in unpredictable patterns; intertwining panic, fear, anger, sadness and a sense of helplessness. At the age of 51, Jerry was declared 100% disabled in a matter of weeks. He was put on short term, then long term disability and life as we had known it...ended. Step by step we began to pick up the pieces and build a new and different life.
I vowed to be with Jerry until the end. Yet, a fear of the future kept entering my thoughts....”what if I can’t do this?” “this could be for twenty years.” “he might be in a nursing home.” I had to discipline myself not to worry about things that may never happen. We lived to the fullest and took each day one at a time. Carpe Diem!
I can think of two things that needed to happen right away. Simplifying and Securing. Simplify the surrounding environment. Secure the finances. Personally, I like to tackle things head on. Knowing the impending cost of this disease prompted me to sell our family home and become debt free. We moved into an adorable little cottage type house that was perfect for the two of us. An elder care attorney set up a healthcare power of attorney so I could handle Jerry’s affairs. Finances, insurance policies, properties and wills needed to be squared away, so that I could focus my attention on caring for him.
Simplifying. The downsizing was the first thing we simplified. Smaller house. Less upkeep. No mortgage. We purged everything we didn’t need anymore. Material things, old clothes, and filed paperwork from the last century! The only things that we kept were functional and personal treasures. Ah....it felt so good. Next was simplifying expectations. We still loved to go out. Now, however, we went to restaurants when they weren’t crowded. We went to movies earlier. We walked the mall and stopped for coffee early in the morning. We traveled extensively. We still went to church, however, the crowds were too hectic, so we entered in the back entrance and slipped in the front of the sanctuary. Anything you can do to keep active, yet simplify the chaos will enable you to enjoy each other longer.
There’s Still More to be Done - an Alzheimer Journey
For quite some time, I’ve asked God why? Why is Jerry going through this? Why is it taking so long? Why the suffering? I learned quite some time ago that the question “Why?” is something that cannot be answered. My belief is that when this life is over, we’ll understand. For now, we’ll never understand the full picture of what God has in store. For me, I can only wait and abide with Him. Walk with Him day by day, moment by moment.
It has now come to the point that we can see that Jerry’s dying is very real. Up until now, we’ve been able to continue and live the life that God has so richly blessed us with. But, now has come the time where the rubber meets the road, so to speak. It’s a lot harder than I thought, but God sustains me. Pretty much Jerry is not aware of his condition. He has moments of delight for which I am thankful. He has security for which I am thankful. He knows he is loved...oh, so loved.
Still, there is a little fight left in him. Even yesterday, he clinched his fist loosely and mumbled. I knew what he was saying...."I’m trying to hold on.” I held his hand and actually tried to communicate about his leaving. I asked, “Why?” He began to cry. I asked, “Are you afraid?” He said, “No.” I held firmly and rubbed his arms, “Don’t you know that Jesus has prepared a place for you?” He heard me and said, “Yes.” I said, “He’s prepared a place for me too. There will come a time when we’ll have to let go.” Then, we both cried. He was aware in those moments.
This morning, however, I had this epiphany. Even though Jerry’s death is near, none of his know the day or hour. It could be a day. It could be a year. Alzheimer deaths are completely unpredictable. I realized that, no, there are still things that have to take place before Jerry goes. God is not finished and there are grand things that must take place first. Grand spiritual things. It gave me a completely new perspective. I saw a much bigger picture...much bigger than just us.
So, maybe that is “why”. The answer is coming and it will be far greater than I could have imagined.
WAKE UP, PEOPLE! STOP BEING SO GRUMPY!
Look at these happy moments. [gallery]
My doggie was begging to go on a bike ride this evening. She is so patient and “neglected” that I thought I’d better take her out. I hooked her up to her leash, jumped on my orange beach bike and began to ride.
No matter what I do, the “Jerry situation” is always in the back of my mind. Everything I see seems to be relative to this situation.
So many of us, don’t know what we’ve got ’til it’s gone. (Hmm. I think that’s a song.) When I was in Ocrakoke a few weeks ago, I couldn’t help but notice how so many couples sat speechless with a bored look on their faces. Several times, I would see how the wife would look at her hubby with a longing look on her face while the man sat with a deadpanned look on his face. I WANTED TO SLAP THEM! AND SAY “DON’T YOU GET IT? YOU COULD LOSE EACH OTHER TOMORROW!” I even noticed how a woman was smiling and singing with the music and the man looked totally annoyed. What’s up with that?
As we finished our ride , I saw a couple standing on their driveway. He had dyed red hair and the grouchiest look on his face. Doesn’t he know that a smiling countenance is much more attractive than dyed red hair? The wife only smiled after I smiled at her. Poor people. You’re on vacation!
PEOPLE! Don’t you understand that life is precious. It could be gone tomorrow! Seriously! Tomorrow you could be wiped out!
If there is anything I’ve learned from this Alzheimer journey, it is that life is precious and should be lived to the fullest. Each day is another day to breath. Each day is another gift and there is no room for lack of gratitude. Each day is one more chance to say “I love you.” Surely, there is something to be thankful for. No matter how difficult it is! MAKE EACH DAY COUNT!
Grrrrrrrrr!
Sorry. Where is my grace?
Our Thursday Visit-An Alzheimer Journey
I arrived around noon and the staff was walking several of the men in the facility to the activity room. The activity directors were grilling hamburgers and hotdogs for the men in the unit. It was their Father’s Day lunch. NO WOMEN ALLOWED! The minute I walked through the double doors I saw this long lanky man’s silhouette in the hallway. They turned him around and pointed. He came running, eyes gazed past me, but hugging me tight. He mouthed, “How’d you do that?” I had to squeeze him extra tight and hold his face to mine so he could see my eyes.
We sat Jerry down with a couple of the other male residents and I began helping serve. It seems to work better to actually participate in the activities, verses observe. Once finished serving, Sherry (the assistant activity directlor), and I sat down. She began to feed one of the residents, I held the conversation and made sure the other spoons were making it to the mouth with food actually on them. Jerry can still hold his burger once I clamp his hands on it. George, Jerry’s roommate, has to have his food pureed. The reason being that an Alzheimer patient, in the late stages, looses the ability to chew and swallow. It was still a positive experience and one that I am now use to.
Once our luncheon was over, Jerry was anxious to “go somewhere”. I took him back to his room to do “the do” before we left. Jetti, our lead CNA came with me to get Jerry changed and spiffed up to go out. I watched as Jetti took care of Jerry. She helped him brush his teeth and gently guided the cup to his mouth, saying, “It’s a terrible, terrible disease.” He depended on her and looked to her for his every move. We talked about Jerry’s decline. And George’s too. She said, “I’m afraid, I’m going to lose several of them at the same time.” They seem to all be declining together.
In a few minutes, I took Jerry to the car. I could tell he was so excited because he had a little perk in his shuffle. His eyes were smiling as we walked arm in arm down the hall. On the way out, he saw some of the other employees. He had to break away from me to give them a hug. They love that. He does too.
We didn’t stay out long. Just long enough to feel a short escape and while we were out, my oldest daughter called. The minute Jerry heard her voice on the speaker, he began to cry. It was only a split second, though, until his attention was elsewhere. The most precious part was when little 4 year old McCauley spoke. They had a special bond and use to eat speghetti together. He asked to speak with Papa J. I encouraged him to continue to talk and that Papa J was in the car next to me. Little McCauley wanted to invite Papa J to come and throw the football. It was so cute and I actually think Jerry heard the word “football”. There is still a tiny connection. I love the innocence and the unconditional love that children bring.
That’s it for today. It was a good day.
Is There a Statistician in the House? - An Alzheimer Journey
My son moved to California probably about ten years ago, not knowing a soul. Through the years he's developed several friendships that have held true. Recently when I went out there to visit him, he arranged a get together with a couple and their daughter at a local Newport restaurant. We had a great time together and made an instant connection.
Teri and I seemed to hit it off right away. She and her husband mentioned they'd be coming to the East coast, so I invited her to come out early to Emerald Isle. FInding out she'd fly into Raleigh, she said, "Hey, I have an old high school friend who lives there that I haven't seen in 14 years. That would be great, I'll visit her too." I said, "Come on!"
As it turns out, Teri brought Barb down to Emerald Isle with her. Barb's young husband has recently been diagnosed with ALS and I can only imagine what is going through her mind as she contemplates the task before her. How well I know her fears, her sadness, her questions, her doubts, her strength to stay positive. She is 49. I was 46.
Now, some may wonder why these three strangers have come together. None of us really knew why, but we just followed our instincts. It didn't take long before we realized that we were all believers in Christ. We shared our testimonies, our life struggles, danced a bit, ate a lot, and laughed. We wondered which would be worse… losing your body and not your mind…or losing your mind and not your body? Both are unimaginable, but this is, and will be, our journey. Our meeting was divinely orchestrated and we knew it.
One morning, I received an email from Jerry's previous nurse practitioner from Duke, Candace. Jerry and I truly love her and "broke the rules" by becoming pretty attached to her. She is a gift to the medical profession. Anyway, I had not had contact with Candace in over a year. That’s 365 days. What were the chances that she would email me on the day that Barb was here?
The next day, while we were all sitting on the beach, I asked Barb who her doctors were and where they would be going through their journey with ALS. She mentioned Duke. I couldn't help but tell her how much I loved the Duke staff and how they were a "Godsend" to me. Then, I mentioned Candace. Barb, stopped me in the middle of my sentence and said, "Candace?" It was like a bucket of blessings were poured over us. Candace will be taking care of them.
Who could have predicted all that? Who could have orchestrated that this beautiful young girl, just entering the journey of her lifetime, would come to my home? She came to the home of someone who has walked a similar journey for 13 years before her. Who could have used a feisty young man, 3000 miles away in California, who would make a particular friend out of millions of people, Teri, unknowingly arrange a get acquainted dinner that would eventually help a young girl entering this journey and who’s doctor was the same as ours? (I think that was a run-on sentence.)
Where’s the statistician? I’m just sayin’.
“And My God will meet all your needs/according to his glorious riches in Christ Jesus.” Philippians 4:19