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The Twilight Years Are Here

The Twilight Years Are Here

Monday, December 10, 2012

I Had a Dad Like That


I found this while searching for something I misplaced.

November 9, 2012

November 11th, Veteran’s Day, would have been Dad’s 91st birthday. He was a veteran of WWII and the Korean War, a B-26 Martin Marauder pilot. In the latter years of his dementia, Dad talked of WWII frequently. The stories were comprised of confused details but the basics of the stories usually remained the same. I wish he were here today to tell those stories, confused or not.

It has been less than three weeks since he passed away. Dad’s wish was to be cremated and buried at the same time as Mom. We have both he and Mom in our bedroom… waiting. Next Saturday, we will lay their cremains to rest side-by-side for eternity. Maybe then it will all finally be real to me. I have felt as if I am under water, going through the motions of living while everything has been just a bit over my head. I do what needs doing but everything has a very surreal feeling.

I have spent most of the time since his departure at my mother’s. Caring for her is completely different than caring for Dad, Mom or Peggy. Mama is of sound mind and can do many things by herself. The treatments (radiation and chemotherapy) to fight the cancer are a big stumbling block but her attitude toward her disease is allowing her to sail over these hurtles. Being with Mama has provided me with a natural defense against grief.

Now that I am home, I find myself swamped with memories. Echoes of Dad’s voice asking, “Where’s Shari?” ring in my head. I have to push back the need to go check on him, with the reminder that he is no longer here. My heart hurts constantly with missing him. It’s as if I have suddenly lost an extremity. He and I became a part of one another that is unlike any other relationship on earth. The weight of the loss is staggering at times.

Over thirty-two years ago, I met this man. I remember thinking to myself, “I wish I had a Dad like that.” As my relationship with my own father deteriorated further over those years, I gradually realized I DID have a Dad like that. My father-in-law never once let me down in the “Dad” department so when it came time to care for him and Mom, I knew in my heart, it was the right thing to do.

He loved God and his country. He loved his wife, his family, and his job. And I have never doubted for a moment just how much he loved me. It was almost as much as I loved him.

Monday, November 5, 2012

Grief: Adrift on a Sea That Has No Direction


Grief must be the most insular of all emotions. Adrift on a sea that has no direction. Each time we grieve, for each person we lose in our lives, it is entirely different. It depends on the relationship we had one with another. Losing a parent, a grandparent, a sibling, a lover, a spouse, a child, a pet, etc. each creates vastly different emotions. I expected to feel the pain born of losing a parent even though I was only Dad’s daughter-in-law. I got it full force.

I knew it was coming long before anyone else did. He and I talked long and often about his desire to go to Heaven. We read the Bible and prayed over it together. He reaffirmed his faith in the Father, the son and the Holy Ghost. In our own ways, we prepared one another for what was coming… that Dad was going… soon. Over the last couple of weeks of his life, I silently grieved as I watched him slipping further away.

I never could have imagined that I would feel two entirely different types of grief. It was impossible for me to prepare myself for the overwhelming sense that I have lost a child. No one ever mentioned that I might feel this way. When you are the caregiver of someone who suffers from the latter stages of Alzheimer’s, you are caring for a child in so many ways. This child is entirely dependent on you for everything. You are solely responsible for cleaning, changing, dressing, feeding, teaching, protecting and loving them.

When you suddenly lose that child that’s inside the parent, there is a void that is staggering. How different your life becomes. How different my life became. For the first time in 3 years, I can leave the house without making sitting arrangements. I can go to the grocery store and not buy the staples that were such a part of his daily diet. (I can’t bring myself to go down the ice cream aisle for fear of dissolving into tears at the sight of his favorite tubs of vanilla.) I no longer have to go to the pharmacy here (seriously, I use to go at least 4 times a week).

I can’t begin to tell you how much I miss hearing him say, “I want my mommy.” I even miss the times he acted out because at least he was here to do it. On the morning of him being gone a week, I awoke in tears. I was saddened by the thought that it was the longest I had been apart from him in 3 years. I was blown away by the thought that each day would irrevocably take us further apart.

Before I had time to adjust to these changes, God moved me hastily forward. Dad died on Tuesday. The following Thursday, Mama passed out and fell. She busted her knees (both knees with chronic problems) because she went straight down on both knees as she lost consciousness. The impact was hard enough to cause compression fractures in 3 vertebrae and she broke 3 toes. I was there that night. I couldn’t have dreamed I would stay a week and a half. I couldn’t have guessed at the number of questions that would be answered while I was home.

Life is already changing at lightning pace. Mama needs more help than she would ever admit. We have a lot of loose ends with our home, jobs, school, etc. We have finally come to the conclusion that we are going to approach life from a rather unorthodox angle. I am going to be home in Florida from Saturday night until Tuesday morning. It will allow me to work my regular Sunday and Monday nights at Peggy’s and take care of the many things that are requiring attention at home. It will enable me to have time with Richard, Jeremy, Jordyn, Melissa, the kids, etc. Then I will be in Gulfport from Tuesday afternoon until Saturday afternoon with Mama. It will give me a chance to have the best of both worlds.

I am home now. For the first time in 3 years, I am in our own home. As much as I miss Dad, I do NOT miss the daily reminders that this was his home and we were just guests here! It’s odd to realize I don’t know if I’ll ever be a fulltime resident here again or not.

For a long time, people have asked me what I was going to do when Dad died. I never had an answer because I didn’t know what life would have to offer me. Now I do know. At least for now, I will be dealing with cancer as well as the aftermath of dealing with dementia.

Wednesday, October 24, 2012

Because I Love You


This was written yesterday...

IF YOU ARE FAINT OF HEART PLEASE DO NOT READ THIS POST

I want to remind anyone reading this that it is a diary… my diary. I write from my perspective about my experiences. This post may be more graphic, more brutal, more intense, than what I usually write but death is graphic, brutal and intense. If you decide to continue I will point out that I have left out many events and details between the last post and this one. Because, sometimes, it is more than enough to simply live it.

It is 2:00 in the morning here. Today is Tuesday Oct. 23, 2012. Dad's blood pressure (BP) has fallen to 90/61 (at last reading) with a heart rate of 130 (It's been above 120 since 7:00 am yesterday morning). His oxygen saturation is down in the lower 50% range. His temperature is 97 degrees even and he is currently breathing approximately 30-32 breaths per minute (bpm). I have increased the oxygen to 3 liters. He is in a coma now, as his body is slowly shutting down. I was blown away to discover that his kidneys are still functioning. It's only surprising because he only had about 40% function to start with. I totally thought they would be among the first organs to fail.

Dad appears to be gently snoring as I sit here writing this. But sounds can be deceiving. The soft sound is actually the beginnings of the death rattle and he is beginning to experience small bouts of apnea (pronounced pauses in breathing). His lungs are beginning to show signs of having fluids in them (the lower lobe of the right being worse than the left). His hands are held in the same position he has been holding them since I wakened on Friday morning. His circulation is slowing down. His feet are like ice though his hands are still very warm. Cyanosis (something that causes discoloration to appear in certain places on the human body as life slips away) has begun to appear, shades of purple and blue are appearing on his knees, across the bridge of his nose and on his upper lip. Under his fingernails the color seems to deepen more each time I look at them. His head is held almost rigidly in place but his jaw is slack, the correct term is that it has "dropped". He has breathed only through his open mouth since last Friday. His tongue is a purplish hue pushed toward the back of his mouth which causes the snore.


I know he is not suffering, but I am, as I watch him... as I listen to him... as I wait with him.


That reminds me of a time when he was hospitalized (there were so many of those). Because he was being discharged (he had been admitted through the ER in his pajamas a couple of nights previously), I had run home to get him clothes. As I walked in the house, the phone began to ring. It was Dad and he had no memory that I had just left him ten minutes before. He thought he was at a movie theater and he wanted a ride home. He was impatient because he thought he had been there waiting for me all afternoon. When I assured him I would be there in just a minute, he began to cry. Again he insisted that he was tired of waiting and he just wanted to go home and eat. He then shouted at me, "I am sitting here waiting, waiting, waiting, BECAUSE I love you!" The entire situation was founded in the delusions of a demented mind, but those words have replayed themselves a number of times since they were originally hurled at me. They have been an odd litany for me over the past few weeks, but never more so than throughout this seemingly endless night. My mind screams, “Dad, I am sitting here waiting, waiting, waiting, BECAUSE I love you!”

It's 4:00 am. That means time for vitals, assessments, and all the medical stuff again. Well, no significant change in any of the numbers, only his BP has dropped a bit. However, the physical changes are pronounced. His fingers are now turning shades of purple in addition to his bluish fingernails. His eyes and cheeks are suddenly sunken and hollow. His breathing is erratic and the bouts of apnea are worsening. I take great consolation in the fact that he is in absolutely NO pain, he is in his own home instead of a cold institution, and that there isn't a nurse alive who could love him as much as I do or care for him as gently.

6:00 am and the sun is finally rising. We have made it through another night. Morning brings with it more rigidity to his worn out body. The blood in his feet is gathering at the back of his heels (called pooling) and he is developing flat spots where they rest against the mattress. The signs are slowly coming together. His BP is the highest it has been since midnight (which is still abnormally low for him). His feet are cold now as his body temperature begins to drop.

At 8:00 am his blood pressure has dropped significantly again. His breathing pattern has changed drastically. His breaths per minute have slowed down slightly. The bouts of apnea have lessened for now. There are no fluid sounds in his throat and he is back to a slight snore.

9:00 am if you didn’t know what the shadow of death looked like you would probably think he is simply sleeping.

10:00 am and everything is changing now. His breaths per minute are down to about 20. His oxygen saturation is down to 46%. His pupils are fixed and have begun to dilate. I have bumped the oxygen up to 4 liters. I know we are nearing the end of his life. I repeatedly assure him that Mom is waiting for him and it is okay to go join her. I tell him frequently that I love him and it is finally time to go. There is nothing more I can do.

Noon brings major changes. His blood pressure has fallen to 79/43. His pulse is at 46 beats a minute. His body temperature continues to fall. I know in my heart that I will not be checking his vital signs at 2:00 pm. I whisper my goodbye in his ear and leave him alone with his daughter. I know how much she needs this time with him. It is her time to say goodbye, to read him psalms and to pray with him.

At 1:30 pm I am on the phone with one of my nephews when Richard rushes up and says I need to check on Dad. ”Get your stethoscope,” he shouts as I toss him my phone mid sentence and rush to Dad. As I approach the bed, I see that he is still breathing… barely. I listen to his heart beating very faintly. I put my left hand on his now cold forehead. He took three breaths and his heartbeat faded away. At 1:35 pm Dad’s soul left his body and he is finally at peace. He is finally reunited with those who have gone before him. Most importantly, he has left behind the Alzheimer’s that robbed his mind. Now he is once again whole.

Monday, October 22, 2012

In These Final Hours




I have felt a presence these last few hours so strongly I have glanced around rooms…
A mere whisper of movement, a tiny breeze that touches my skin to leave a shiver in its wake…
So strongly I have felt it, I called out your name softly so as not to disturb… either of you.

I watch him sleeping and marvel at the sense of peace I feel wash over me…
At the peace I see erasing the lines time and life have chiseled into his face…
I feel comforted to know that you await him with open arms… anxious to be by his side once again.

Like you, I have loved him… and cared for him… I have devoted this part of my life to him…
My arms feel empty at the thought of him preparing to take wing and fly away from me…
My heart overflows as I feel you hovering nearby, eager to begin your next chapter… with him.

I bow my head and pray knowing that the time to depart his life here on earth draws ever nearer…
I am honored to be here with him, with them, privileged to have had them call me daughter…
I am humbled by the love they still share and blessed to have borne witness to its enduring power…

There will be dancing on the clouds of Heaven soon, while a host of angels sing and rejoice…
Before long this precious father-in-law of mine and his beloved bride will finally be reunited…
Never again to be separated by… time… space… life… or death… together for all eternity…
together they will forever soar free.

It's Sunday and Time Is Marching On...

Sunday, October 21, 2012

Around 3:45 this morning, I called hospice. Dad could no longer swallow and was choking. I knew it was time, but I needed them to tell me it was. The nurse assured me it was time to start administering atropine drops to reduce secretions and a combination of Roxanol and Xanax to keep him pain-free. Because he was in distress, I gave him the prescribed dosage. He settled into a deep and peaceful sleep. For now, he seems to only need the meds every 4-6 hours.


The grandchildren and great-grandchildren that live locally were here most of the day. The children don’t hesitate to run in and out of his bedroom. Little Tyler is only 4 years old and he goes and “checks on” his Pop every 10 minutes or so. I cannot help the smile that crosses my face every time I hear that little voice shout, “Hi, Pop!” when he enters the room. The dog periodically jumps up on the bed and slinks forward to lick Dad’s face. His only living daughter spent a great deal of the afternoon by his side. As these things occur, I am reminded that we are a family and this is life.


It reminds me of all the reasons I had my youngest daughter at home, rather than a hospital. There I was at peace, surrounded by those closest to me. Here he is at peace, surrounded by those closest to him. There a life was welcomed in a virtually pain-free environment. Here a life is waiting to enter the Kingdom of Heaven in a completely pain-free environment.

This is a celebration of life tinged with a hint of great sadness. To lose one you love is always heart-wrenchingly sad. But, there is great joy at the thought of him finally freed from the Alzheimer’s that was slowly destroying him. There is great joy at the thought of him finally being reunited with his beloved bride of nearly 70 years.

Without a shadow of a doubt, it’s going to be another very long night and I’m betting it’s going to end up being just me and him. Together, waiting, as time marches on…

Saturday, October 20, 2012

It's Just the Two of Us Here


Yep, it’s official. Dad has a Urinary Tract Infection (UTI). It took until Tuesday to get a viable sample. Because it was almost closing time at the lab, it was Wednesday before we got the results. I am not a patient person by nature but this has been a ridiculously long drawn out process. A normal person would go to the ER and they would diagnose it quickly, hand you a prescription for an antibiotic then send you on your merry way. Dad is on hospice so things are no longer normal. I cannot take Dad to the hospital this time because they would admit him. I promised him that he would die at home. I will honor that promise.

By Tuesday night, he was aggressive and combative, obviously not in his right mind. Every time I got within arms-reach, he would grab my arms in a grip stronger than I could have ever dream he was capable of. He would squeeze them tighter and tighter until I could break free. He laughed and told me he wanted to break them. He would claw and pinch. When I fed him, he spit the food at me and was convinced I was trying to poison him. He tried to bite me multiple times.

On Wednesday the tests results came back that he had a raging UTI. For a variety of reasons, they had to grow a culture to determine which antibiotic to put him on, which meant waiting another 24 hours. While the nurse was here she got to see him trying to break my arm. She said it even scared her. He was getting worse and we both knew it. They started him on pain medication believing his combativeness was caused by pain he couldn’t communicate to us. Apparently they were right because the behaviors stopped as soon as he started taking it.

By noon on Thursday Dad had become less responsive, sleeping constantly. Barely rousing to eat, drink and take meds. Steadfastly, he refused to open his eyes. That afternoon, the culture results came back…contaminated. Once again, we needed a urine sample. It was getting harder and harder to get one.


Friday dawned and I was shocked to see the further rate of deterioration. He is beginning to look gaunt. He doesn’t respond to anything but pain (ie. If I move him to change his diaper he moans). His oxygen saturation level has dropped to a consistent 89. I started him on 2 liters of oxygen and called hospice. We quickly agreed it would be best to get a nurse out here to get a sample using a catheter since it was obvious there was no other way to get one. It was also obvious we were running out of time.

A new nurse came out and she seemed to understand my frustration at the whole situation. Once we had the sample, she got the doctor on the phone. She requested that she be allowed to call in a prescription for a standard antibiotic, Cipro to buy us time to get the lab results. He started it as soon as I could pick it up, but I have to wonder if it’s already too late. This is the point where I have to have faith in medical science and BELIEVE that it might work.

This morning Dad was aware of me when I gave him his meds, crushed up and swimming in water. My heart swelled to nearly bursting when he croaked out a labored, “I love you”. I still can’t get him to open his eyes. But he did squeeze my hand weakly in response to my squeezing his, which is more than I’ve gotten since Wednesday. The threat of aspiration hangs over us as I continue to try to get water, Ensure and medications down his throat. I know I am fighting a losing battle. Still, I must continue to try.

Dad is 90 years old. He’ll reach 91 if he sees Nov. 11th. His medical history is unbelievable. His list of current diseases and conditions is quite lengthy. The number of pills he takes daily is staggering, even now. He lost his bride two and a half years ago. All of his old friends are gone now. He has buried two of his daughters. He has zero quality of life and has had for quite a while now. He has given up and is ready to go.

His body is slowly shutting down as I sit here listening to him breathe, the sound separate from the steady rise and fall of the oxygen machine. This afternoon, Richard helped me get him cleaned up and get his bedding changed. He roused as we finally got him resettled and actually opened his eyes. Dad focused his eyes briefly on his son and whispered, “I love you”. He tried to talk more but the effort was simply too much. He managed to keep his eyes open through almost half an Ensure and a bit of water. His eyes trying to focus as he followed my movements. Eventually, his eyelids softly closed, his eyelashes fanning out against his sunken skin.

He has been sleeping ever since. It is just the two of us here. I hold his wrinkled hand tightly. My voice rings loudly in my ears as I talk to him while coaxing him to swallow “one more dropperful of water”. Each time I succeed my heart rejoices. Each time he chokes, my heart plummets. Every once in a while, he tries to clear his throat then all settles back to the rhythms of man and machine. And time marches on…

Monday, October 15, 2012

"Why Won't You Let Me Go?"


Escalating Agitation Born of Confusion

“Who are you?”
“What are you doing?”
“Why are you touching me?”
“Get away,” (slap, slap, slap)
“Stop!” (slap, slap, slap) “Stop!”
(struggle, slap, struggle) “Help! Call the police!”
“Get me a phone they are holding me hostage…”


(Sob) “I want my Mommy. Please.”
(shaky hand grips my wrist)
“Why won’t you let me see her?”
“Why are you doing this to me?”
(shaky hand wipes wet eyes)
“I just want to go home.” (body shudders once)
“Why won’t you let me go?”


Momentary Leap Into the World of Lucidity

“What time is it?”
(struggling attempt to rise)
“What can I do to help you today?”
(eyes focus on me, clear and comprehending)
“I miss my wife.”
“Do you think I will ever get to see her again?”
“How did everything get so fucked up?”


(shaky hand reaches for me)
“I know you didn’t sign up for this.” (sigh)
“I don’t understand why you have stayed.”
“I want you to know I’d be dead without you.”
(squeeze tightly) “Please don’t leave me, okay?”
(eyes search mine) “Can I ask you a question?”
“Why won’t you let me go?”

Sunday, October 14, 2012

3 Days of Decline


As far back as 2001, we knew there was something wrong with Dad. By 2005 he was on anti-psychotic and anti-Schizophrenia medications but his primary physician avoided an official diagnosis. In 2007, he began prescribing Alzheimer’s medications, sent him to a psychiatrist and a neurologist… but still no diagnosis. I have read his medical charts, so has his most recent primary physician. There was never a point when he was actually diagnosed but the introduction of various medications tell a tale all their own.

This insidious disease spread slowly through his brain. His rate of decline amazingly having its own pace. But things have taken a surprising (to me) turn. His physical and mental decline are accelerating faster and faster. They have reached a point far beyond my control. Far beyond anyone's control.

Day before yesterday he decided to give up. He no longer wishes to live. More than anything on earth, he wants to “go home”. He spent the morning waiting alternately for his “Mommy” or the school bus. His speech was starting to slur. When asked where he was, he repeatedly responded, “England”. He constantly fretted saying that he doesn’t understand why we are keeping him here against his will. He was still able to help with his transfers from bed to potty chair and back. But, I could easily see he was growing weaker.

Yesterday his speech not only slurred but his words rarely made sense. He slept almost constantly and it was a tremendous struggle to get him to wake up long enough to force food and drink into him. At one point, trying to get him onto the potty, we ended up falling on the floor together. On the bright side, when we went down I was able to completely break his fall…with my body. It took almost 20 minutes to get him off me and rolled into a position that allowed me to drag him backward to rest his back against the side of the bed so I could go get Richard (he was downstairs asleep) to come help me get him up and back into bed.

Today has been different. He has slept much of the day. Sometimes he is a little bit clear, other times he is a lot hazy. He is in diapers now and he he seems to have no control over his body. Richard has gotten his first clear picture of how serious things have become. He has been a big help today and for that I am grateful. I know how difficult it is for him (after all, this is his father) but I am glad he finally sees clearly what our lives, Dad’s and mine, are like now. I spoke to hospice about my growing concerns. I also requested that we check him for a urinary tract infection. If he has one, some of what is going on may be explained by that. I guess we will know more tomorrow. Richard cooked dinner tonight and we (even Jordyn) ate it in Dad’s room with him. He ate it all, sometimes lucid, sometimes not. His imaginary world is now his constant companion. I watch him slipping farther away, a little more each day. My heart hurts and I am just plain tired.


Friday, October 12, 2012

New Orleans Is Next to Heaven



I know I have been absent for a while. I can honestly say that I have been completely and utterly overwhelmed by life. When life is coming at you, all at once, from every angle, it gets hard to put thoughts in order sometimes. There is also the unbelievable exhaustion that is caused by the mind that seems to be playing catch-up with the body (in my case, the battered and bruised body). But, the longer between writing the more I need it, if for no other reason than to exercise my demons and short comings.

I was blessed to get to go with Mama (and my sister) to her first Radiation Oncology appointment. Hearing the hope and BELIEF in this doctor’s voice that we could buy Mama some time with radiation and chemotherapy led me to set up a non-profit organization that will help pay her medical bills. I named it “Hope for Ann” and so far, we have raised almost $4,000 in less than a month! A dear friend, Terri, organized an all-day benefit last weekend, that enabled us to raise over $3,000 alone! Unfortunately, it is only a drop in the bucket of her mounting medical bills.
Mama and I had a long talk and I plan to keep “Hope for Ann” going for a long time to come. We will single out one person at a time, with terminal cancer, and we will raise funds to help them pay their medical bills. Some of my amazing friends have offered to embark on this journey with me. I can never thank them enough for their love and support. I can never thank EVERYONE involved enough for all they have done and are continuing to do.

I also have to mention that I planned to shave my head bald as a show of solidarity for my mom. She vehemently opposed the idea so I chopped all my hair off to donate to Pink Hearts Fund http://pinkheartfunds.org a group that makes wigs for children with cancer. My youngest daughter did the same as well as a couple of our friends. I am also now the proud owner of a white ribbon (for lung cancer) with my mom’s initials tattooed over my heart and my oldest daughter is sporting a new tat of a white ribbon on her foot. Solidarity at its finest!

Dad has had more ups and downs than are even imaginable. For the most part, he was doing pretty well… until I went out of town. I was given a trip to Colorado for the wedding of one of my “adopted” kids. One of the biggest honors of my life was getting to stand in as the “mother-of-the-groom” and it was truly one of the greatest trips I have ever taken in my life. I will cling to that always. As is the nature of a caregiver, I have to force back the feelings that so much could have been avoided “if only I hadn’t left him”. I left on Sept. 21st and returned on the 24th. What a difference a few days can make!

The week before I left town, I took Dad to see his primary physician. He changed his medications and it was decided that we would switch to hospice as soon as our time with home health ran out. A couple of days before I left, Dad’s beloved physical therapist, Helen, had to tell him that it was her last visit. That was a very hard day for both of us. Helen and I have become friends and she was the first person I told that we were calling in hospice. Dad was aware enough of the loss that he acted out horribly the rest of the day. His world had tilted out of balance and he knew it. Now, add to that the awareness that I was going out of town (most importantly, I wasn’t going to Ms. which he is used to) and throw in the fact that I had my oldest daughter come from out-of-state to take care of him. I mentioned to a couple of people, the doctor included, that he always seems to get sick or injured if I go away and prayed that things would be okay here while I was gone.

God has his own agenda. Apparently, he was doing alright on Friday and Saturday but then on Sunday, he only wanted to sleep. That afternoon, he went to the bathroom and fell. My husband, Richard, had to get him up and back into bed. He didn’t eat and barely drank anything all day. That evening, my daughter called concerned by that and the fact that he hadn’t taken any medications that day. I told her to wake him up and make sure he drank a full glass of water and ate a banana while taking his evening meds. She did and he went back to sleep as soon as he was done.

On Monday, he again fell. This time Richard had to call the EMT’s to get him off the floor and back into bed. After monitoring him for over an hour, they decided to not take him to the emergency room. Other than a small abrasion on his lower back, he seemed unharmed. Richard picked me up at the airport and told me what all had been going on in my absence. I didn’t even make it to the car before I knew we would be going to the ER that night and told Richard so. The 45 minute ride home seemed to last hours and I had to control the mind blowing urge to scream, “Hurry!” every few seconds.

I threw my bags aside as I came through the door. When I got to his bedroom, he was trying to push himself back up onto the bed, repeatedly scratching his tailbone on the side board. I grabbed him and called for Richard. When we had him fairly secured on the edge of the bed, I called for an ambulance. After a couple of hours, a bottle of fluids for dehydration, and several tests, it was determined that he had a small crack in his tailbone, multiple abrasions and bruises, but there was no reason to admit him.

The doctor (who we have dealt with many times over the last 9 or 10 years for both Mom and Dad) came in and knelt on the floor beside my chair. He looked me in the eyes and told me that he believed the medication changes were responsible for the falls. Then he asked me something I will never forget, “Take all his diseases and conditions and add them up, now multiple them by losing the person you loved an entire lifetime, then divide it all by 90… would you really want to keep fighting?” I told him that the orders had been signed to start hospice as soon as home health ran out. He suggested I call them both the next morning.

Just like that, we were discharged under one and admitted to the other. It truly couldn’t have been an easier process. Where home health was a tremendous help while Dad was still getting around and fairly self-sufficient, he had progressed beyond their functions. Hospice swept in offering help, supplies, resources, etc. For the first time in 3 years, I know that help is a phone call away and will be until the very end. It is nice to feel less alone in all of this.

The downhill spiral he took while I was gone continued until he was bedridden and slipping farther into his own mind. His Sundowner’s has taken a predictably bad turn over the last couple of months. At app. 4:30 pm EVERYDAY, he becomes increasingly delusional, belligerent and hostile. He invariably stops recognizing his home and anyone in it and is convinced that we are holding him here against his will. He is uncooperative and can physically lash out. He asks frequently where Mom is and why I am keeping her from him, unable to remember that she died in 2010. Eventually he begins to whine that he wants to go home. When asked where home is he replies, “New Orleans”. It wasn’t until last night that he mentioned that Mom always said, “New Orleans was next to Heaven” so he needs to get there to be ready to go. I remember my Grandmama telling me she wanted to “go home”. I remember how peacefully she did. I thank hospice for that and I thank them for their support again.

Last weekend while we went to Ms. for the benefit, Dad was moved to a local nursing home for 5 days of Respite care. Medicare pays for this service for 5 days every 90 days through hospice. Remember that caregiver burnout I was headed for back in Aug.? It finally caught up with me. The break was a great thing for both of us. We couldn’t believe how good he looked when Richard and I arrived to pick him up. He even fed himself all of his lunch while they processed his release. Unfortunately, he thought he had been arrested and that he was in jail. But the gratitude and genuine affection he showered Richard with at “breaking him out of this sh*thole” was nice to see.

He seemed to be in great spirits as we got him home and settled. But as the afternoon shadows lengthened outside, I watched him fade slowly back inside his demented mind. He obviously didn’t recognize me as I searched for ways to stop his mental retreat and by bedtime, we were both exhausted beyond belief.

He is belligerent a lot of the time now and has become increasingly violent toward me. He insists he can do things like standing on his own but he starts to fall if you let go for even a moment. He tries to scoot out of the bed without calling for help and gets stuck halfway through the process. He can no longer do anything unassisted and that frustrates him to no end. The other night, he reached out a hand to me with a smile. When I took his in mine, he yanked me down to him and smacked me in the face with the other one. Instantly, his smile was replaced and a look of absolute hatred replaced it. I jerked away reciting a litany of, “It’s not him, it’s the disease” to myself. I have to recite it a lot, especially when my old bruises have new bruises on them.

Today started early, about 4:45 am. Dad started calling, “Hello? Hellllllooooo?” I struggled to break free from the sheet on my makeshift bed otherwise known as the living room sofa as his voice rose in volume. He had wet the bed and needed cleaning, changing, and to go to the bathroom again. His speech was blurred and he was very unsteady, completely unable to do anything at all. Once clean and dry, he instantly fell back asleep.

He slept until the nurse’s aide arrived to bathe him. He is concerned that he missed the school bus today despite reassurances that today is a teacher planning day and there was no school. He believes he is a little boy and is waiting for his mommy to get home from work. When the nurse arrived she asked him how old he was, he replied that he was 56. When she asked where he was, he said he was in his home. When she asked where his home was, he said in England.

The rate of deterioration seems to be hurtling us ahead at a lightning fast pace. He is slurring his words and he is beginning to forget how to eat. Drinking water from a sippy cup with a straw is beyond him most of the time. He frequently chokes on food or drink. We are past the point of hoping for good days. Now, we can only hope for good moments. The washer and dryer are in near constant use, loaded with sheets, blankets and pajamas. Note to other caregivers: I have finally given up on the bottoms unless he is up and in the wheelchair. He was going through them faster than I could wash and dry them. It has also lightened my load because we aren’t struggling in and out of them all day, every day.

After seeing him today and helping me get him onto the potty chair, our nurse has decided to order us a Hoyer lift. This is an assistive device that allows patients in hospitals and nursing homes and those receiving home health care to be transferred between a bed and a chair or other similar resting places, using hydraulic power and slings. My back is thrilled at the thought of some relief. Moving a 6 foot tall man who weighs app. 195 pounds would take its toll on anybody. Moving said man all by oneself is possible but unbelievably difficult.

Hospice has come to my rescue. They have provided me with all the medical equipment I need to provide the best care I can here at home. They take care of his prescriptions, his Depends, wipes, pads, razors, shaving cream, medical supplies, etc. If we run low on anything, all I have to do is call and they will deliver it to me. They send someone to bathe him 3 times a week. We have an assigned nurse who is gentle and caring when dealing with him (which is a couple of times a week).
{Sometime & a wrenched back later} They just delivered the Hoyer lift. Whoever designed that thing obviously never considered its use with someone who suffers from severe incontinence, Crohn’s Disease & Prostate problems. This can only get more interesting. I will do my best to keep you posted.

Sunday, August 19, 2012

Squamous Cell Carcinoma is One of the Dirtiest Things I Know


Well, here we are. Dad’s mental state is deteriorating noticeably. He has this annoying new habit of laughing to himself when he disagrees with anything that is said to him. I never knew a laugh could sound so painful… so hateful. He is becoming more paranoid and delusional daily. He frequently has no idea where he is and asks why we “brought him here to visit”. He is transported back in time to Louisiana and believes he still lives there. It isn’t uncommon for him to ask me to “take him back to his bride”.

Physically he is doing amazingly well. Ask anybody that knows him and they will tell you he looks better than he has in years. If you were to ask his doctors, they would tell you that he is in remarkable shape for someone with his list of physical conditions, diseases and age. He is frequently referred to as a medical miracle. It’s as if his physical state is improving as his mental state declines.
Tomorrow, we will go in for yet another surgery. Dad has squamous cell carcinoma on his right ear, again. They will do Moh’s surgery and it will be gone… until the next time.

This past week we found out my mother has squamous cell carcinoma. It’s not on her, it is inside her. She has lung cancer. It wasn’t there in April when she had a CT scan because of pneumonia but it is there now in August. I wish to God there was a treatment like Moh’s that could fix her as easily. Hers is inoperable. We are so in need of a medical miracle here. What a difference it makes to have something like this inside your body rather than outside it! I hate that I am here and not there. I hate that I constantly end up feeling like I am letting down someone in my life, someone that I love. It is all part of the curse/blessing of being a caregiver.

For those who may not know it, my mother spent the last seven years of my grandmother’s life as her caregiver. She devoted herself to her mother. She gave up her home, her time, her everything to be there and care for her mother. We lost Grandmama 5 months ago. Needless to say, Mama has been killing herself trying to settle her estate, deal with all the little things that have to be done, all while dealing with her grief. As she has physically deteriorated, we all assumed it was just a part of the insane stress she has been under. We never guessed there was a time bomb ticking inside her.

Caregiver stress weakens the immune system. A weakened immune system allows things like cancer to grow. I can’t help wondering if there isn’t a direct correlation between the amount of stress and the rapidity of the growth of her disease. I am so frustrated and angry at something so far beyond our control. But I do know that those feelings, too, will eventually pass. Isn't it odd how much of everything in our lives depends on the passage of time?

My mother is one of my heroines. She is one of my best and dearest friends. She raised me and my little sister as a single mom in an era where we were the minority. Very few of my friends growing up lived in a one parent household. If they did, it was usually because a parent had died, not divorced. Mama worked for a pittance and struggled to provide for the three of us. She held her head high and did the best she could (with much help from her beloved parents). She taught me that I can do anything I put my mind to as long as I believe in MYSELF. Most importantly, she loved us.

Over the last five months, I have thought to myself countless times that Mama finally has an opportunity to LIVE. She can finally live her life for herself… she can do the things she has never been free to do… she can live a life where she doesn’t have to answer to another living soul. I’m a bit pissed off that a stupid disease is invading her and trying to knock her down. It is a strong reminder that life is too short. It’s a shame it takes reality biting us in the butt to remind us that life is ALWAYS too short!

I have often said that I come from a long line of Steel Magnolias. It is strong, female, southern stock that always seems to rise like a phoenix amidst the ashes of circumstance. Yes, I know I am somehow mixing metaphors but I also know that the people who read this will completely get my meaning. I also know that there is always a chance my mom will beat this thing simply because she is who she is and she is a Steel Magnolia.

If you know my mother, you know what a great person she is. If you don’t know her, I sincerely wish you did because your life would be enriched by the acquaintance. But whether you know her or not, I ask that you lift her up in prayer, kind thought and wishes. Every little bit helps. And we all need a little help sometimes.

Thursday, July 26, 2012

I'm Better Than I Think I Am (Most of the Time)

I’m going to touch on a subject I have talked about before. It’s probably the subject every caregiver hates most to talk about. It’s definitely something I hate to admit. I am heading for a bout of “caregiver burnout”. I can feel it happening like a runaway freight train headed straight for me while I am tied to the tracks.

If you know a caregiver, give them a hug and offer to give them an afternoon off. You might just save them. I’m sure everyone feels it differently so I thought I would share a bit of how it feels to me. But first I have to explain how I get to this point. I take care of Dad round-the-clock five days a week. The other two days (Richard’s days off) I work overnight taking care of a 90 year old lady and Richard takes care of his dad. What this means is, I take care of people 24 hours a day 7 days a week. For a month at a time, I do really well, but after that I NEED a break. If I don’t get one, I start feeling like I am going to break. Imagine the emotional roller coaster caused by PMS magnified by 100 times or so and you will have a small sense of what it feels like.

I feel like I need to cry so often it disgusts me. I get horrendous headaches and I don’t sleep well. I have an extremely short fuse and it doesn’t take much to ignite it. I begin to second guess myself on every decision I make. I feel run down and can only hope I don’t get sick. I start having anxiety attacks. I pray for relief. I wish I were anywhere but here.

I feel like the very essence of me is being sucked out of my body, drained from my heart. I give so much of myself to my elderly people that there isn’t much left at the end of the day. It’s an exhaustion I never could have imagined until I had felt it firsthand. Maybe it’s because there is no “end of day” for a caregiver. You are on duty ALL the time. Even when I am sleeping, there is a monitor on in the room with me so that I can hear my charges, at home and at work. I have to be available if they need me. I’m not exaggerating when I say it’s a 24/7 job.

I have heard taking care of the elderly compared to taking care of a baby. In some ways it is and in some ways it isn’t. Babies don’t talk back or argue or sling obscenities, they can’t hit or scratch or bite. Babies are dependent in their innocence; adults are innocent in their dependence. Lifting a 20 pound baby and putting it into bed can’t compare to doing the same for a 100-200 pound adult. Honestly, you can’t even begin to compare changing a baby’s diaper to changing an adult’s. You can’t compare much about the two at all.

Try to imagine it… Your only time off is when you are going back and forth to the grocery, pharmacy, work and your child’s bus stop with an occasional trip to the bank or Walmart thrown in for good measure. Did I mention your only time off revolves around taking care of your charges needs, too? Sometimes, it can be extremely overwhelming and a bit suffocating. When you can’t get anything accomplished around the house because your charge won’t let you out of their sight. When you have a hundred things to tend to but you are cleaning the bathroom for the fourth time that day. That’s when the “burnout” begins.

Here’s a “catch 22” for you: Dad is doing so well with meeting the goals that home health set for him, they may have to release him. These companies exist to help keep people out of hospitals. Medicare figures it will be way cheaper in the long run to keep you healthy (or as healthy as you can be) than it would be if you were hospitalized. They are, of course, right in this assumption. In order for him to be recertified, he has to show a medical need for them being here. Alzheimer’s isn’t a valid reason. The get ladies who come here to work with him have given him a new lease on life. The interaction with adults outside our household is such an important part of his mental health. In his eagerness to please, he does everything they ask him to. Unfortunately, on paper that means he is getting better physically so they may have to stop coming. If he were to get sick, fall or injure himself, he would instantly be recertified. See, we are stuck between a rock and a hard place. The last thing anyone wants, least of all me, is for him to get sick or injured. I don’t want that as much as I don’t want to lose the additional help with him.
I think there should be a new study done on “caregiver burnout”.

I would be interested in knowing how much money is spent on caregiver healthcare each year. What percentage of that is Medicaid (or Medicare) dollars? Could there be less money spent in this area by providing more services such as home health to help alleviate some of the stress that caregivers deal with? Stress can lead to physical illness. I can’t afford to get sick or more levels than you can even begin to imagine.

As time goes on with his illness, things will only get worse. It’s the nature of the disease. We will float on the fringes of the healthcare system. Sometimes we will have help and sometimes we won’t. This will continue until the day arrives where I have no option but to call in hospice. Then, we will finally have available help that will stay with his case until the end. Unfortunately, that’s the way the system works, you have to be dying to get as much help as you need. I am grateful for what Medicare does do. But, to be honest, I’m pissed off at what it doesn’t do.

It seems like the contributing factors to “caregiver burnout” are endless but I keep reminding myself that I wouldn’t like the alternative any better. Mostly, I’m just mad at the disease and what it does to everybody who is touched by it. Knowing that I have a RIGHT to feel the things I feel helps a lot. Knowing that I have a support system of friends and family who lift me up helps me keep going. Knowing I will survive? That is the key to not losing my mind completely.

Sunday, July 22, 2012

On The Subject of...



ON THE SUBJECT OF SKILLS: My 13 year old has proven just how big his heart is lately, not to mention how sharp his mind is. He frequently asks Dad to play cards with him. It has been a long acknowledged fact that “Pop” loves Gin Rummy. He and his “bride” played almost every day of their last few years together (and a whole heck of a lot of days over their lifetime together). Jordyn uses it as a way of connecting with him. When he can manage to get him to play, he has Pop keep score on the pretense of needing him to teach him how to keep score. This is a wonderful move on Jordyn’s part as it requires Dad to use his mind and his forgotten math skills while interacting with him on a one-on-one level.

Over the course of their two most recent games, I have seen Dad remember the rules, as well as accurately keep the score. He makes the same comments over-and-over again but Jordyn just smiles and nods. It really tickled me to hear him say, when laying a Queen down, “Look, Pop, it’s a lady.” He winked and said, “The lady is a tramp, right?” It was great seeing him turn the familiar words back to Dad, but it was even better seeing Dad light up at hearing the familiar words. As he is apt to do, he broke out in full singing voice, “That’s Why the Lady is a Tramp!”

***A sidebar: Dad will also burst into singing an old song “"APALACHICOLA, F-L-A!" that was written by Bing Crosby back in the 1940’s if anyone mentions the word Apalachicola. Richard loves to find ways to bring it into conversation just to hear his dad sing.

However, it was sad to hear Dad ask halfway through the game, “Who are you? Where did you come from?” Jordyn never missed a beat as he patiently explained, “I’m Jordyn. I’m your great grandson.”
Dad immediately said, “Sure you are. I knew that. Where do you live?”
To which Jordyn answered, “I live in the bedroom at the other end of the hall, Pop. Now, whose turn is it to deal?” The way he got him off the unsettling subject showed a maturity beyond his years. The patience he shows, most of the time, makes me proud.

I sometimes question the wisdom of raising a child in this unpredictable environment. But, every time I do, I stop myself with the realization that Jordyn is loving, compassionate and patient. He is learning to be even more so BECAUSE of the environment that surrounds him. The lessons he is learning are no less important than the ones I am learning daily, that all of us who live here are learning. I choose to believe he is going to be a better adult because of it all.


Now, ON THE SUBJECT OF MONEY… it has been an exhausting week. I was treated to a tantrum (otherwise known as a “fit” by us Southerner’s) a few days ago, the likes of which, I had never seen before. Dad decided he wanted me to cash a check for him. I asked him how much money he wanted me to get and he replied, “$5,000”. I told him that was an awful lot of money and asked what he needed it for. He was instantly enraged and rose shakily from his chair. He asked rather heatedly, “Is it my money? Can’t I have some of my money if I want it? Do I have to tell you everything?” He stomped his foot several times for emphasis as he went on, “I want some money in my wallet and if I want enough to look like a big shot then I should be able to get it. It’s none of your business why I want it. It’s your job to do what I tell you to and I want you to get me some money!”

I went into instant placation mode. I told him I would be happy to go cash a check for him the next morning because the bank was already closed for the day. I pointed out that I thought $5,000 was an awful lot of money to have to keep up with and that it might be better to get less. This began a war of negotiations that lasted more than 20 minutes. In the end, we agreed he could have $400 and he signed the check made out to “cash”. It remained a constant subject for almost 2 hours (until I finally left for work).

The following morning, I went to the bank and cashed the check. As soon as I walked in the door, I gave him the money. He made a big deal of folding it and sticking it in his pocket. I could tell he was completely confused but Richard was in the room and he tries not to discuss money in front of anyone but me. As soon as he finished his breakfast, he sat down his recliner and spread the money out on top of his newspaper, calling for me (though I was only 8 feet behind him). I sat down beside him and suggested he put the money in his wallet so it wouldn’t get lost.
He rolled his eyes (that and “Whatever” are 2 of his habits that drive me crazy) and asked, “Why did you give me all this? I don’t understand”. I reminded him that he wrote the check the previous night and had asked me to cash it for him. “But, I don’t need any money. Why would I ask you to get me $100? I don’t go anywhere so I don’t NEED any money.”

“Um, Dad, there is $400 not $100.” I counted out loud as I separated it into 2 piles one had 2 one hundred dollar bills and one had 10 twenties. He pushed my hands out of the way and gathered the money up. He painstakingly attempted to count it himself, separating it into 2 new piles. After a couple of attempts, he had a hundred and 5 twenties in each stack. Getting frustrated because he couldn’t accurately count it, and because he couldn’t remember how much it was supposed to be, he folded the piles up putting one in each of his front pockets.

He started to rise from his chair. I put a hand on his back to steady him and gave him a slight nudge while I suggested he put the money in his wallet so it wouldn’t get lost. “I have to go to the bathroom,” was his reply. “I will do it in a minute.” I am pretty sure, as he left the room I may have rolled my eyes.

When he came back 15-20 minutes later, he had money sticking out of his pocket. I reminded him he needed to put it in his wallet. Obviously exasperated, he pulled the money out of his right pocket as soon as he sat down. “Where did that come from?” he asked. I again explained that he had gotten me to cash a check for him. He pulled his wallet out and started to put it away. I suggested he put the rest of the money up, too, pointing to his left hand pocket. Confusion reigned supreme as he finished putting up the money in his hand and then dug in the other pocket. “I don’t have any more,” he said, reaching to put his wallet up. I turned to him with battling senses of alarm and resignation, “Dad, you divided the money in half and put it in both your front pockets before you went to the bathroom. Remember, I suggested you put it away in your wallet? You said you would AFTER you went to the bathroom?”

He looked at me like I was crazy, “Sweetheart, I don’t remember any such thing. I don’t even know why I have all this money.” The whole time he was talking, he was turning all his pockets out. Sure enough, he only had half the money! I assured him I would look for it and took off down the hall. I went to the bedroom and looked everywhere I could think of. I went to the bathroom and looked everywhere I could think of. I got on my hands and knees and looked under everything I could think of. I looked in, behind, and on top of everything I could think of. Alas, the money was nowhere to be found. The whole time I looked, I could hear him mumbling to himself in the other room. As I got closer I could hear him saying, “I’m going crazy. I don’t understand any of this.” As I stepped into the room, he looked at me on the verge of tears and said, “I don’t even remember what I lost!?!”

I assured him it was ok. I patted his hand and told him not to worry about it, “I’m sure it will turn up, Dad. These things have a way of working themselves out.” Then I turned the TV on and asked if he wanted a Coke. By the time I returned with it, he had obviously already forgotten the entire incident and peace was temporarily restored.

Three days later and I still haven’t found the money (still haven’t found the partial bridge he lost 4 months ago either). I am starting to think he may have flushed them down the toilet by accident. Yes, his teeth and the money. Maybe I will find the teeth someday. Maybe I won’t. Maybe I will find the money someday. Maybe I won’t. All I know for sure is we are at a point where I can no longer let him have his way about certain things. Battle lines seem to need to constantly be redrawn.

Today, he pulled out his wallet and wanted to know why he has so much money. I gave him an abbreviated version and then pulled up the image of the actual check on our bank’s website so he could see that HE wrote the check. He was greatly disturbed by the whole situation. It must be so hard to hold your head up when being confronted with your own actions. But it must be even more so when you can’t formulate a single glimpse of a memory regarding it. After several tense moments, he asked if maybe we should do something with all the money in his wallet. He suddenly realized that he might lose it.

Making a quick decision, I got smart. “Hey, Dad, why don’t you keep 2 twenties and 2 ones and I will put the rest back in the bank? If you run out of money I can always get you more. How does that sound?” The instant he acquiesced I removed the extra money and put it safely away to be taken to the bank tomorrow. I will always wonder if the teeth will turn up. I will always wonder if the money will either? I will always feel a sense of accomplishment when a crisis is averted with Dad. I will always wish they could be avoided altogether. And, without a doubt, I will always, always hate this disease.

Sunday, July 8, 2012

Don't Let the Sun Go Down On Me


Elton John wrote the music for and sang "Don't Let the Sun Go Down On Me", Bernie Taupin wrote the lyrics. For a couple of months now, I have found myself singing this tune in my head daily as the sun slides lower into the western sky. It could so easily be the theme song for Sundowner's Syndrome. The only line that doesn't fit is "I can't find, oh the right romantic line". Here are the lyrics. See for yourself what I mean...


I can't light no more of your darkness
All my pictures seem to fade to black and white
I'm growing tired and time stands still before me
Frozen here on the ladder of my life

Too late to save myself from falling
I took a chance and changed your way of life
But you misread my meaning when I met you
Closed the door and left me blinded by the light

Don't let the sun go down on me
Although I search myself, it's always someone else I see
I'd just allow a fragment of your life to wander free
But losing everything is like the sun going down on me

I can't find, oh the right romantic line
But see me once and see the way I feel
Don't discard me just because you think I mean you harm
But these cuts I have they need love to help them heal



I don't think I will ever hear it again without thinking of all the people who suffer from a syndrome that is still a HUGE medical mystery. I know I will always think of Dad in particular.

Recently, I was running late getting dinner on the table one evening. As we sat down, Dad and I, I noticed that the shadows in the room were longer than usual and that Dad was moving a bit slower than usual. As the meal progressed and the darkness outside began to close in, I was startled to see Dad deteriorate right before my eyes. He became increasingly more confused. His ability to find the right words to express his thoughts became rapidly nonexistent. He began to tremble and had great difficulty getting his fork properly up to, much less into, his mouth. By the end of the meal, he was beginning to drool and could not rise from his chair by himself.

Normally, by that time of night, he is either dozing in front of the T.V. or he's already in bed. Perhaps that's why I had never seen such a dramatic downward spiral. Actually, that isn't true. The only other times I had seen anything like it were times he was hospitalized. He suffers from Hospital Psychosis as well and the Sundowner's is markedly worse when he is institutionalized. At least when he is there, I can leave the worst of it to the medical personnel. At home, it's just us, and we have to get through it the best we can. In general, things are getting worse so it stands to reason this would as well. We are both frozen here on the ladder of our life.








If you would like to read more about Sundowner's Syndrome try http://sundownerfacts.com/sundowners-syndrome/



Saturday, June 30, 2012

Worth the Read (Snagged from Cyberspace)




When an old man died in the geriatric ward of a nursing home in an Australian country town, it was believed that he had nothing left of any value.
Later, when the nurses were going through his meagre possessions, They found this poem. Its quality and content so impressed the staff that copies were made and distributed to every nurse in the hospital.
One nurse took her copy to Melbourne .. The old man's sole bequest to posterity has since appeared in the Christmas editions of magazines around the country and appearing in mags for Mental Health. A slide presentation has also been made based on his simple, but eloquent, poem.
And this old man, with nothing left to give to the world, is now the author of this 'anonymous' poem winging across the Internet.


Cranky Old Man.....
What do you see nurses? . . .. . .What do you see?
What are you thinking .. . when you're looking at me?
A cranky old man, . . . . . .not very wise,
Uncertain of habit .. . . . . . . .. with faraway eyes?
Who dribbles his food .. . ... . . and makes no reply.
When you say in a loud voice . .'I do wish you'd try!'
Who seems not to notice . . .the things that you do.
And forever is losing . . . . . .. . . A sock or shoe?
Who, resisting or not . . . ... lets you do as you will,
With bathing and feeding . . . .The long day to fill?
Is that what you're thinking?. .Is that what you see?
Then open your eyes, nurse .you're not looking at me.
I'll tell you who I am . . . . .. As I sit here so still,
As I do at your bidding, .. . . . as I eat at your will.
I'm a small child of Ten . .with a father and mother,
Brothers and sisters .. . . .. . who love one another
A young boy of Sixteen . . . .. with wings on his feet
Dreaming that soon now . . .. . . a lover he'll meet.
A groom soon at Twenty . . . ..my heart gives a leap.
Remembering, the vows .. .. .that I promised to keep.
At Twenty-Five, now . . . . .I have young of my own.
Who need me to guide . . . And a secure happy home.
A man of Thirty . .. . . . . My young now grown fast,
Bound to each other . . .. With ties that should last.
At Forty, my young sons .. .have grown and are gone,
But my woman is beside me . . to see I don't mourn.
At Fifty, once more, .. ...Babies play 'round my knee,
Again, we know children . . . . My loved one and me.
Dark days are upon me . . . . My wife is now dead.
I look at the future ... . . . . I shudder with dread.
For my young are all rearing .. . . young of their own.
And I think of the years . . . And the love that I've known.
I'm now an old man . . . . . . .. and nature is cruel.
It's jest to make old age . . . . . . . look like a fool.
The body, it crumbles .. .. . grace and vigour, depart.
There is now a stone . . . where I once had a heart.
But inside this old carcass . A young man still dwells,
And now and again . . . . . my battered heart swells
I remember the joys . . . . .. . I remember the pain.
And I'm loving and living . . . . . . . life over again.
I think of the years, all too few . . .. gone too fast.
And accept the stark fact . . . that nothing can last.
So open your eyes, people .. . . . .. . . open and see.
Not a cranky old man .
Look closer . . . . see .. .. . .. .... . ME!!


Remember this poem when you next meet an older person who you might brush aside without looking at the young soul within ... . . .
we will all, one day, be there, too!
PLEASE FEEL FREE TO SHARE THIS POEM,
The best and most beautiful things of this world can't be seen or touched.
They must be felt by the heart.

Thursday, June 28, 2012

"Jesus H. Christ in the Foothills"



The other day, Dad disappeared in the direction of his bedroom 11 different times over a 5 hour period. On average, he was back there 15-30 minutes each time. Each time he came back to the living room, he would wish me a good morning, ask how I had slept, tell me how much he liked my “new hair” and then ask me to fix him a bowl of cereal. And each time, I would respond as if I hadn’t heard it all already, time and time again. We were stuck cycling through his version of the movie “Groundhog Day”. For the first time in ages, I was relieved that his Sundowner’s finally arrived to break the spell he was under. I was also very thankful to have my job to go to.


Today was such a good day. I pulled out dresser drawers filled with Mom’s stuff and sat on the living room floor next to Dad and went through it all. We narrowed 7 drawers (full of photos, old correspondence, antique linens, etc.) down to 2 drawers of stuff that will need further perusal. We managed to throw out the rest. We talked and laughed and showed each other the things we found of interest. For the first time, in longer than I can remember, Dad was clear. He was alert and aware. We finally managed to accomplish something that has needed doing for over 2 years. As I write this, I am already clinging to the warmth and clarity we shared today. I wish it weren’t so fleeting.

The setting sun is the enemy once again. As the sun sank slowly in the west, Dad became more and more confused. He was shocked to learn that Richard lives here and that I am his wife... over and over again we went over it and, over and over again, he was shocked. He got me to call Richard twice so he could talk to him. He insists that nobody told him that Richard lives here and that it’s been months since he has seen him (he sees him every day!).

Apparently my being agitated causes me to count things because I seem to be all about numbers tonight. Dad opened the front door and stepped on the porch 7 times looking for “Richard and his wife”. He is excited because he will finally be meeting his daughter-in-law! At one point, he stumbled on the threshold and I reached out to steady him. With surprising strength, he knocked me backwards. I lost my balance and tumbled backwards over an ottoman landing in an inelegant heap on the floor. To which he exclaimed, “Jesus H. Christ in the Foothills”. In total, he said it 51 times between dinner and going to bed. As a rule, this particular expression is reserved for times of extreme stress. Obviously, tonight is beyond stressful to him. He sat down and rose from his chair (which is getting increasingly more difficult with each passing day) 16 times in 2 hours. I have never seen him more restless than he was tonight.

When he was finally ready to call it a night, he came to me and kissed me goodnight. He turned toward his room but only took a couple of steps before he turned around and came back to kiss me goodnight. He then, made his way halfway across the room before turning back, exclaiming, you guessed it, “Jesus H. Christ in the Foothills”! I rose and made my way to him, gently turning him back toward his room. He kissed me for the third time before finally making it into the hallway.

“Goodnight, Dad. I love you!” I called after him.

“Goodnight, Sweetheart,” came the reply. “I love you, too.” He stuck his head back around the corner and said, “Let me know when Richard and his wife get here, will ya? I need to let him know I love him, too.”

Sigh…

Tuesday, June 19, 2012

I'm NOT Your Dad


Sunday was Father’s Day. I put all of his gifts into a large gift bag; a new flag for the front yard (his is still good but living at the beach, they don’t last long), a 6 pack of undershirts (I threw all the old ones away the night before), his favorite cookies, imported chocolates and a collage of photographs of Mom. His delight was obvious as he pulled each item out. When he was finished, he put everything back in the bag and set it on the floor next to his chair. He was cheerful and relatively lucid and stayed that way most of the day.

Every hour or so after that, he would “discover” his gift bag and “open his gifts”. He spent the afternoon telling me what a wonderful birthday he was having and thanking me for everything. Finally, I decided we would try something a bit different. The next time he “opened” his gifts, I suggested we put the pictures of Mom on the coffee table where he could see it. He loved the idea and I spent many minutes placing it exactly where and how he wanted it on the table. The next time he “opened” his gifts I made a big deal over his undershirts, opened the package and folded them as he continued to dig through his bag. When he was done, I took the undershirts to his room and put them away. This little game continued until dinner was ready and the bag was finally empty.

At dinner, he was starting to show the signs of Sundowner’s but only slightly. By the time dessert rolled around he was still cognizant enough to ask if he was getting birthday cake to go with his ice cream. I laughed and told him between the cookies and chocolates he’d eaten all afternoon I thought he had probably had enough sweets for the day. For the first time in a very long time, we honestly had a good day. While he may not remember it, he gave me a Father’s Day to remember and cherish.



Monday morning was a totally different story. Dad didn’t wake up on the wrong side of the bed he woke up on the wrong side of Alzheimer’s. From the instant he stepped into the room, it was obvious we were going to have a rough morning. DeeAnn, The Shower Lady, was coming shortly so there wasn’t enough time to eat breakfast. I made him a piece of toast and a glass of water so he could take his meds. He wanted cereal and became quite petulant when I explained repeatedly that he could have anything he wanted AFTER his shower.
“I don’t want to wait. I want cereal now and if you don’t get it for me you can find yourself another job!”

Exasperated, I retreated to the kitchen. As soon as I turned the water on to wash a couple of dishes, he demanded I “come here right now. I’m talking to you!” Turning the water off, I looked back to him, “Yes, Dad?”
“I’M NOT YOUR DAD!” he shouted. “I have had it with you being impertinent. You can call me Bill. On second thought, you need to get your things together and GET OUT! This is my G*#d%mn house and I’m tired of you telling me what to do. YOU…ARE…FIRED!”
I took a deep breath as my hands gripped the counter until my knuckles turned white. I faced him across the bar and said, “I know this is your house, but you can’t fire me because I don’t work for you. You have been my Dad for the last 31 years so I am going to continue to call you Dad.”

Shaking with barely suppressed fury, he came around the counter. “Get the hell out of my house. I don’t want you here. You don’t do anything for me and I don’t want you to. You are fired, fired, fired!”
“You can’t fire me because I don’t work for you!”
“Oh sure, you work here for free. I’m supposed to believe that? If you are working here for free then you have something very wrong with you. Nobody works for free. Who do you work for? Give me their number so I can call them and have them fire you.”
My voice dropped to a dangerously low level, “Dad, I don’t work here. I am your daughter-in-law and I have lived here for 3 years and taken care of you. Nobody can fire me because we are in this together and we are going to be until the very end.”

Frustrated, he sat down and finally ate his toast and took his medications. I was so relieved when DeeAnn arrived just so I could walk away. As soon as she left, the nurse, Stephanie, arrived. It was obvious to her that Dad was not having a good morning. He snapped at everything I said until she finally called him out on it and asked him to be nice to me. She also explained that there are certain questions she has to ask me because I am the only person who knows the answers. Bless her heart, she really tried to get him off my back but he was there to stay.

By the time noon rolled around, I had been told to shut the f*ck up 3 times and I had been fired 4. Needless to say it was a rough morning for everybody. By the end of the day, I managed to get 6, “I’m not your Dad’s” before I got one single, “I love you, Sweetheart.” You can’t begin to imagine how grateful I was to go to work… or how much I worried about him after I left…

Sunday, June 17, 2012

Kidney Update & Dad Tries to Score a Date



On Friday (June 15th), we went to see the kidney specialist. We couldn't have hoped for better news than we got. Dad's lab work was amazingly good. His kidney function rose again and is now at 47%. You may remember that he was at 45% back in March and 32% last year. He is making actual progress which is something that is virtually impossible. He is considered a medical miracle by many. For the first time in years, instead of his regular quarterly check-up, he doesn't go back until the end of December. That's 6 whole months!

Dad was in rare form during the visit. He had the doctor laughing the entire time. One thing I like about Dr. Jimenez is his genuine interest in Dad's well being. You can tell he really likes Dad and enjoys their visits.
At one point, the doctor asked Dad if he had any complaints. Dad launched into his diatribe on having his driving privileges taken away. Dr Jimenez has heard this many times before. Dad said he didn't know why they won't let him drive just that he isn't allowed to. He followed it up by seriously announcing that Dr. Bolton was the one who did it... "the son-of-a-bitch!" Our eyes locked for a brief instant before we both looked away and burst out laughing. Dad crossed his arms over his chest and jutted his chin out, "Well, he is!"


On our way out, I had to stop and make his next appointment. Dad sat down in the waiting room and struck up a conversation with an attractive lady that looked to be in her late 60's or early 70's. I was busy talking to the girl at the desk for several minutes. She was telling me how much she enjoys listening to Dad talk because he is so funny. That she looks forward to his appointments. Feeling like a proud mother who receives compliments on their unruliest child, I thanked her for her kind words and turned to leave.

Now clearly focusing my attention back on Dad, I turned just in time to hear him ask the lady he was talking to for her phone number. She started digging in her purse (I presume looking for a pen but I'm not sure). He suggested they could go out to dinner some night. Then he explained that he can't drive so somebody else would have to. "They took away my driver's license and made me sell my brand new Lincoln I had just ordered from the factory because I have a disease." Looking my way, he asked, "Sweetheart, what do I have?"

I smiled, "Alzheimer's. Dad, you know if you want to go out to dinner or anywhere else, all you have to do is ask and I will gladly drive you". I smiled at the lady as she snapped her purse shut. She smiled at me and nodded, telling Dad it had been nice talking to him and wishing him a good day.

As we walked out the door, I thought to myself how easily he could forget from one moment to the next. But he stopped me in the hall and turned to me with a twinkle in his eyes. "One of these days, I might surprise you and find a lovely lady to run away with since you won't run away with me."


I pulled into the driveway and reached to turn the ignition off. Dad stopped me, "Where are we going now?" I replied home. He asked if we could go get a burger. As I backed out of the driveway, he said he wanted to go to Appleberries (his nickname for Applebee's). As soon as we entered the building, he needed to go to the restroom. I pointed to the table where we would be sitting and then directed him to the restroom (the table is ideally situated as he can't get far from the restroom without me seeing him). I ordered our drinks and said I wanted to wait until my companion came back before ordering.

When I finally saw him about 20 minutes later, I went to assist him. We made it within 4 feet of the table before he apologized and said he needed to go back to the restroom. I asked if he would like me to order and he said, "Cheeseburger & fries," as he wandered back the way he had just come.

Another 10-15 minutes went by before I heard his voice, slightly shaky and a bit panicky, asking a waitress, "Where's Shari? I can't find Shari! Where is she?" I jumped to my feet and made it to the corner at the same time he did. His relief was visible as soon as he saw me. I assisted him to our table and we sat down. Within minutes, he was fidgeting and kept saying, "It really is cold in here, isn't it? Why is it so cold in here? I'm freezing."

Finally, I turned to him and asked if he would rather get the food to-go and take it home to eat. Of course, he thought that was a wonderful idea. I called the waiter over and asked if he could please change our order to go. 5 minutes later we were headed home.


Everything was great when we got home. For the second day in a row, Dad had not taken a nap all day. He was lucid and in good humor... until just before dinner time. As the sun sank lower on the horizon, he became disoriented and confused. He kept asking me questions like "What time do you go home? How long have you worked here? What do I pay you? Who are you married to? What does your husband do for a living? Where did you come from?" etc. For over 3 hours, I answered the same questions over and over.
By the time he finally crawled into bed, I think we were both equally ready for the day to end.

Monday, June 11, 2012

Home Health to the Rescue (My Rescue)


Being a caregiver is a 24/7 job. You live your life for someone else, always putting their needs before your own. In a lot of ways, that’s the hardest part. It’s hard to understand how difficult it can be to even work in 30 minutes to take an uninterrupted bath. Your time is not your own. You have to consider how your every action might affect the person you are caring for.

It is so much more intense than being a new parent but similar in many ways. I find myself checking to see if he is breathing as he slumps in his chair napping his days away. I find myself waking frequently at night and listening for the sounds of him breathing through the monitor. Instead of diapers you deal with Depends. Instead of crying you deal with cursing and yelling.

At times, he won’t let me out of his sight. If I leave the room for even a couple of minutes, he becomes hostile or pouts, insisting that everything is more important to me than he is. At other times, he wants me to go away and leave him alone, to quit hovering and telling him what to do. Frustration, helplessness, and a sense of feeling overwhelmed have become my constant companions. Alzheimer’s takes hostages and makes enemies. It sucks you into the trenches and fights dirty. It is a war you cannot win.

However, you can fight it and perhaps even slow it down. I started by contacting Dad’s general physician and asked if we could be reassigned to a home health agency we have worked with in the past. I told them honestly that I needed help getting Dad to be more active. That he is in dire need of contact with humanity and that I am in a bit over-my-head at this point.

On Saturday, we met Sylvia. She is the RN that will be working with us through a home health agency. She got a pretty clear picture of where his disease is developmentally while doing his intake. She suggested bringing in physical therapy, occupational therapy, a podiatrist (to help with his ¼ inch thick toenails) and an aide (who will help get him properly showered, shaved, etc. once a week). At this point, it is a constant battle to try to convince him to take a shower, it’s a battle I usually lose. It probably won’t be much longer before I will have to get in the shower with him to bathe him.

When Sylvia asked what the chief medical complaint was, I replied “caregiver burnout”. The look in her eyes clearly told me she understood. By the time she left, I wanted to throw my arms around her in a BIG hug. I also wanted to cry with relief, feeling so much less alone in my care for him.

Today (Monday), we met Helen. Helen will be his physical therapist. For the first time ever, he was not on his best behavior with a stranger around. He acted up enough to give her a pretty clear idea of what I am dealing with. He was very ugly to me every time I spoke (though he couldn’t answer any of the questions himself). At one point, he even yelled at me to “shut the f*ck up”! In a way, I was equally humiliated and relieved that someone outside our household had finally seen his dark side.

Helen will be coming 3 times a week to start and believes that she can get him to be more mobile. She is also going to work with me on ways to get him off the floor when he falls. I think we are off to a positive start. I went out to speak to her when she left and we discovered that she had been Peggy’s (the lady I take care of a couple of nights a week) physical therapist last fall. She has a very clear idea of what my life is like and I think she may turn out to be a valuable asset in Dad’s life.

I am already feeling that my load is a bit lighter. Just knowing that we are making some sort of progress to better improve the quality of Dad’s life makes my life brighter. I only wish I had known before now that there were resources available, you just have to know where to look.

Friday, June 8, 2012

A Comment I Received


I received a comment from someone who has been reading my blog. My blog is open to anyone but I have the right to publish comments, or not (I chose not to). I wasn't planning to share it, but a friend of mine has encouraged me to copy, paste and post it as it's own post and to encourage comments on it. So, the following is exactly the message I received...

"I have been reading your blog and I think it is so wrong of you to put your father’s Alzheimer's onto cyberspace. Your blog is the whiniest crap I have ever read. It was your choice to be his caregiver so you should shut up and live with it. I feel so sorry for your dad that he has a daughter like you taking care of him. I bet you are just sitting there waiting for him to die. Get over yourself and quit writing this crap because nobody wants to hear it!"

Thursday, June 7, 2012

"Pop's Outta Trol"


After dinner I had cleaned the kitchen and was sitting at my computer while the kids played in their playhouse. Dad was watching TV in the living room. I suddenly remembered I had promised Mama I would call her after dinner. I got her on the phone and our conversation got a little animated. (That part of the story is too long to write but I would love to share it some time as it is QUITE exciting!) Anyway, Dad was getting restless and kind of squirming in his chair. Even though they weren't loud, I cautioned the kids to keep it down. He continued his agitation and began making noises like banging his glass down on the table and sucking air through his teeth. I cut the conversation short and got off the phone.

I told the kids to pick up their stuff because it was almost time to go downstairs. Dad struggled to rise from his chair and turned to face the kids. He was shaky as he grabbed the back of his chair and said, "You kids get your sh*t out of here and go home. Don't you have parents somewhere?" Then he turned to me and said, "You, too. This is my Go#d*mn house and if you think I'm going to turn it over to you so you can run a nursery school, you're out of you f$*king mind! You better find another job because I don't want the likes of you here in MY house."

I bent down to the kids (they edged toward me quickly when he started his tirade). I hugged them close and told them to go downstairs to the spare room and watch TV til I got there. I looked Ayla straight in the eyes and made her promise to stay there and keep TyTy there until I got downstairs. She nodded her head and whispered seriously, "I know, Nonni. Pop's outta trol." She took TyTy by the hand and led him to the stairs.

I turned to the bar and began gathering my things (computer, charger, phone, paperwork, etc.). Dad tottered toward me. "Don't forget your walker, Dad," I reminded with my back to him. Suddenly, he grabbed my arm with more strength than I would have credited him for having and swung me around to face him. Less than a couple inches from my nose, he began yelling, "DON'T TELL ME WHAT TO DO! THIS IS MY GO#D*MN HOUSE! GET OUT OF MY HOUSE AND DON'T COME BACK. I DON'T WANT YOU HERE."

I was pinned between him and the bar with a bar stool on either side of me so couldn't easily move. My only way out was to bump a stool out of the way with my hip. I turned to do just that and Dad suddenly swung out with his right hand and smacked me across the face. My first thought was, "Wow, he has big hands!". He managed to catch me from my ear to my chin. Ear ringing and cheek stinging, I blinked back the tears that threatened.

With no hesitation, I reached out and grabbed him by the pockets on his shirt, using the fabric to give me something to keep him from falling, as I pushed him away from me. Snatching my stuff up, I made it halfway across the room before he shouted at me, "I'm going to call the police and have you thrown out of my house! I don't want you here and I'm not giving you another penny. I don't know who hired you and I don't care. I just want you out of here. GET OUT! GET THE HELL OUT OF MY HOUSE!!!"

Right this minute I wish I could. My cheek is a tiny bit sore still and my heart hurts. Life is getting harder with Dad. I sure wish there was somebody who could take care of him for a week and give me a break away. I feel like his disease is sucking the life right out of me. I deal with it day in and day out. Some days it's difficult to even go to the bathroom without causing him alarm. He hates me to be out of sight. The good times are the memories I will keep if I can keep the bad memories from dragging me under.

Lord, give me strength, wisdom and courage...

Monday, June 4, 2012

I Wonder Why God Doesn't Like Turtles


6-1-12
One of the Stage 6 tricks we’ve come to know intimately is the “after nap meltdown”. Dad takes a nap nearly every afternoon. No matter how clear he may be when he lies down, he wakes up suffering from paranoid delusions. I am positive he’s dreaming the things he describes but he is utterly convinced that they are real and happening around him.
A couple of days ago, he walked around the living room loading his walker with photos of Mom, a couple of magazines, his cookies, etc. I asked him what he was doing. He told me he had to pack because the military people who were taking over the house would be here soon. According to him, he had been in contact with some military people and they needed the house for a “top secret hideout”. He was very upset that he couldn’t remember which branch of the military it was. “Not that it matters”, he said. “As long as they are fighting for the US of A, it’s all the same.”
It took me almost 2 hours to convince him it was all just a dream. About the time he started accepting that, he looked around the room. He wiped his shaky hands over his wrinkled face and said quite loudly, “Jesus H. Christ in the Foothills! What is happening to me?” Tears welled up in his eyes as he looked over at me. “Sweetheart, what is happening to me?”
I went to him and knelt next to his chair. I took his hand in mine. “It’s that darn disease, Dad. It’s just messing with you right now.” I kissed him on the cheek. “It’ll be okay in a little while. Why don’t you see what’s happening on the Weather Channel for me. I heard it might rain.” I thank God frequently for building an ADD mechanism into Alzheimer’s. I made it to the kitchen before I started to cry.


In the course of one afternoon recently, Dad was in a plane, a boat, and on a streetcar. He interrupted his own story several times to ask me when “Johnny was coming home”. Each time I would reply, “Dad, Johnny isn’t coming home. He passed away more than 40 years ago.” Johnny was his brother.
Dad: “Oh, who are you married to then?”
Me: “Richard.”
Dad: “Richard who?”
Me: “Richard, he is your youngest child.”
Dad: “Oh sure. I knew that. Of course, I knew that.” He goes back to watching TV for a minute. I head toward the kitchen. “Say, Sweetheart, when you get a minute can you come here? I really need to talk to you about this flying business.”
I go back and sit down. “What about this flying business?”
Dad: “I think the government is asking too much from me. I told that guy that took me up in his plane this morning that I just think I am too old to be flying planes anymore. I’m honored they offered me the job. I know we need the money but I think we should tell him to find somebody else. What do you think?”
Me: “I think you’re right, Dad. Should I give him a call for you?”
Dad: “I would appreciate it, Sweetheart. I can always count on you.”
Not knowing what else to do, I pulled out my cell phone and dialed my voicemail. With Dad hanging on my every word, I explained that his doctors really didn’t think a 90 year old man should be flying a plane. I even said that his medication could cause problems at high altitudes but that he wanted them to know he was deeply honored to be asked. When I finished my “call” he visibly relaxed and held his hand out toward me. I got up and took it in mine. He squeezed my hand then kissed the back of it. “That was perfect. Thank you. I don’t know what I would do without you… except die.”
I dropped a kiss on the top of his head. “Well, I’m not going anywhere but to the kitchen to start dinner, so you don’t have to worry about doing without me.”

6-3-12
Sundowner’s Syndrome is a huge factor in our everyday life. Dad becomes more confused and disoriented as the sun gets lower on the horizon. He becomes an entirely different person than he is at any other time of day. Once the sun sets, it’s a 50/50 prospect of whether he will snap out of it or not. Lately, it is more not. He is far more paranoid at night and at times, he is hostile.

Another fact of stage 6: Dad seems to have forgotten some basic things. He seldom flushes the toilet. I go behind him and do it. He soils his clothing and is unaware of it until I get out clean clothes and make him change into them. He goes to the kitchen at night for a coke or some ice cream and things turn up in the craziest places. For example: BBQ sauce in the dishwasher and dish soap in the microwave.

Day before yesterday, I opened the seat of his walker. The following is a list of the contents: 2 empty coke cans, 1 ½ packs of oatmeal cookies (he hides them from the kids even though they all know where they are), a toy airplane still in the pack (Ayla gave it to him for his birthday last Nov.), 3 plastic cups, 1 glass, 2 magazines, a week old newspaper, a flashlight, a spoon and a dirty ice cream bowl. So now, I have to check it frequently to clear the daily debris. I’m guessing he has been putting things in there with the intentions of taking them to the kitchen then promptly forgetting them. “Out of sight, out of mind” is never truer than with someone suffering from Alzheimer’s.



Dad is finding it more difficult to keep up with normal conversations around him. He often complains that everyone talks too fast for him to keep up with. He can’t follow television shows for the same reasons. It seems like his brain is in constant misfire mode and the only thing any of us can do to help is to slow down our speech. He also sleeps an average of about 16 hours a day and is apt to wander around aimlessly at night.

I hate that it is getting harder to reach him as he is slowly drawing into himself. Yesterday, he commented, “I feel like a turtle inside his suitcase (shell). The world keeps passing me by and I don’t even feel like sticking my head out to see what’s happening. Sometimes I wish I could just stay there.” He settled into his chair and reached out a hand for me. I took it as I stood beside him. “I sure wish I knew what God has in mind for me because I can’t see any reason for Him to make me keep living without my bride. Maybe He doesn’t like turtles.” He shook his head sadly, "I wonder why God doesn't like turtles?"
To which there is simply no reply.

Sunday, May 27, 2012

Seven Stages of Alzheimer's (A Loose Guide)


Seven Stages of Alzheimer's Alzheimer's symptoms vary. The stages below provide a general idea of how abilities change during the course of the disease. Not everyone will experience the same symptoms or progress at the same rate. This seven-stage framework is based on a system developed by Barry Reisberg, M.D., clinical director of the New York University School of Medicine's Silberstein Aging and Dementia Research Center.

Stage 1: No impairment (normal function) The person does not experience any memory problems. An interview with a medical professional does not show any evidence of symptoms of dementia.

Stage 2: Very mild cognitive decline (may be normal age-related changes or earliest signs of Alzheimer's disease) The person may feel as if he or she is having memory lapses — forgetting familiar words or the location of everyday objects. But no symptoms of dementia can be detected during a medical examination or by friends, family or co-workers.

Stage 3: Mild cognitive decline (early-stage Alzheimer's can be diagnosed in some, but not all, individuals with these symptoms) Friends, family or co-workers begin to notice difficulties. During a detailed medical interview, doctors may be able to detect problems in memory or concentration. Common stage 3 difficulties include: Noticeable problems coming up with the right word or name Trouble remembering names when introduced to new people Having noticeably greater difficulty performing tasks in social or work settings Forgetting material that one has just read Losing or misplacing a valuable object Increasing trouble with planning or organizing

Stage 4: Moderate cognitive decline (Mild or early-stage Alzheimer's disease) At this point, a careful medical interview should be able to detect clear-cut symptoms in several areas: Forgetfulness of recent events Impaired ability to perform challenging mental arithmetic — for example, counting backward from 100 by 7s Greater difficulty performing complex tasks, such as planning dinner for guests, paying bills or managing finances Forgetfulness about one's own personal history Becoming moody or withdrawn, especially in socially or mentally challenging situations.

Stage 5: Moderately severe cognitive decline (Moderate or mid-stage Alzheimer's disease) Gaps in memory and thinking are noticeable, and individuals begin to need help with day-to-day activities. At this stage, those with Alzheimer's may: Be unable to recall their own address or telephone number or the high school or college from which they graduated Become confused about where they are or what day it is Have trouble with less challenging mental arithmetic; such as counting backward from 40 by subtracting 4s or from 20 by 2s Need help choosing proper clothing for the season or the occasion Still remember significant details about themselves and their family Still require no assistance with eating or using the toilet

Stage 6: Severe cognitive decline (Moderately severe or mid-stage Alzheimer's disease) Memory continues to worsen, personality changes may take place and individuals need extensive help with daily activities. At this stage, individuals may: Lose awareness of recent experiences as well as of their surroundings Remember their own name but have difficulty with their personal history Remember: It is difficult to place a person with Alzheimer's in a specific stage as stages may overlap. Distinguish familiar and unfamiliar faces but have trouble remembering the name of a spouse or caregiver Need help dressing properly and may, without supervision, make mistakes such as putting pajamas over daytime clothes or shoes on the wrong feet Experience major changes in sleep patterns — sleeping during the day and becoming restless at night Need help handling details of toileting (for example, flushing the toilet, wiping or disposing of tissue properly) Have increasingly frequent trouble controlling their bladder or bowels Experience major personality and behavioral changes, including suspiciousness and delusions (such as believing that their caregiver is an impostor)or compulsive, repetitive behavior like hand-wringing or tissue shredding Tend to wander or become lost

Stage 7: Very severe cognitive decline (Severe or late-stage Alzheimer's disease) In the final stage of this disease, individuals lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement. They may still say words or phrases. At this stage, individuals need help with much of their daily personal care, including eating or using the toilet. They may also lose the ability to smile, to sit without support and to hold their heads up. Reflexes become abnormal. Muscles grow rigid. Swallowing impaired. According to Alzheimer’s Association at the following link… http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp