WORTH A LISTEN


I heard this song today. It reached out to my heart. I hope it reaches your's, too.


https://www.youtube.com/watch?v=C4kXequ2Lls

NORMAL PRESSURE HYDROCEPHALUS

Shouldn't we be ruling this out as a matter of course?


http://www.foxnews.com/health/2014/11/12/is-it-really-alzheimers-treatable-condition-mimics-symptoms-dementia/

An exciting new voice is being heard in the community.


http://thecaregiversvoice.com/the-caregivers-voice-video-channel/the-caregivers-voice-video-channel-debut/

I Am Officially an Ambassador

I know it's been a while, but I have some exciting news! I am honored to have been chosen to be an Ostrich Purple Angel Ambassador. There are only 50 of us WORLDWIDE! We are a group committed to raising Dementia awareness. This movement was started by a friend I made through a Facebook Dementia support group. Norman MacNamara was diagnosed with Lewy Body Dementia at the age of 50. You can find more information on this disease at http://www.lbda.org/node/7

He is fighting back in the most admirable way possible. He is changing the way the world thinks about Dementia/Alzheimer's. The programs he has implemented in his community will save lives. Together, we hope to take these projects worldwide! Just as we are hoping that people will one day see the Purple Angel symbol and know what it means instantly!

This opportunity opens a whole new chapter in dealing with Dementia for me. I hope you will all stay with me on my continued journey because, "Together WE can make a difference!"

5 Things to NEVER Say to Someone With Alzheimer's

The following link gives some great advice that would be beneficial to any caregiver dealing with Alzheimer's/Dementia, as well as the person they are caring for...

http://www.huffingtonpost.com/marie-marley/5-things-to-never-say-to-a-person-with-alzheimers_b_3662958.html?utm_hp_ref=caregiving

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.

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.

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…

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…

"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?”

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.

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.

Damned Spark Plugs

With this disease, time can be your friend if you choose to see it as such. On Friday, I was at my wit’s end. The ups and downs were just too fast and furious to keep up with. Dad was so far out of control, and at times, so far out of touch with reality that I was having a hard time keeping up.

The highlight of my Saturday was receiving a phone call from him late last night (he was upstairs and I was down). He had found my cell phone number on a piece of paper in his bathrobe pocket and thought I was a girl he had met in a nightclub a few days ago. LOL! He called to invite me to come over and spend the night with him! I went upstairs and assured him he must have been dreaming and he drifted off to sleep again.

Today, he woke up and came toward the kitchen. When he saw me, he stopped in his tracks and said, “I know this is going to sound stupid but where the hell are we?!?” A quick look at his face, and the cloud covering it, told me he clearly didn’t know.

I replied, “Four Mile Village in Santa Rosa Beach, Fl. We are in your house… the house you have lived in for 32 years.” Slowly I made my way to him and gently took his arm, leading him to his chair.

He put his elbows on his arms and buried his face in his hands. “Goddamn! Why am I so stupid?” He began to cry as I reassured him that he isn’t stupid, it’s simply his disease causing him to get confused. When he got hold of himself, he asked me what the name of the disease was. I told him Alzheimer’s. “That’s right. I knew that.”
Then he asked, “What is it? What does it do? Please try to help me make sense of all this.” As he stared into my eyes with the most heart wrenching of appeals, I searched frantically to find a way to explain it that he would be able to understand.

Taking a deep breath, I said, “Dad, it’s kind of like the spark plugs in a car. If one or more of them are misfiring, the engine doesn’t communicate properly. The neurons in your brain misfire sometimes. Sometimes they short out. It doesn’t make you stupid, it just makes you forget things and it makes you confused when it happens.”

He gave me a watery smile and asked, “Can’t we get some new spark plugs?”

“I wish it were that simple but it’s not.” I put my arm around him. “There is no cure for Alzheimer’s. There is no way to fix it but the medications you take are slowing it down.”

He turned to me. “This morning when I woke up, I went to the bathroom. While I was standing there, my mind started spinning, thinking about all sorts of things. It began spinning and spinning and spinning till everything ran together. When it finally slowed down, I didn’t know where I was so I came in here. When I saw you, I knew you would know the answers. I knew you would take care of me. You always take really good care of me.” He smiled, “Can I ask you a question?”

“Sure Dad. You can ask me anything.”

“Who are you married to?”

I softly replied, “Richard.” Dad shook his head and muttered, “Damned spark plugs”. In a flash I knew that we had each made a connection with the others world. It was an illuminating yet frightening insight. But one I am so thankful to have experienced.

Battered & Bruised, Dazed & Confused

Today has been a nightmare, dealing with Dad. He is aggressive, defiant, belligerent and completely confused. This morning he lined up wastebaskets on the kitchen floor and refused to let me move them. He had no reason for his action other than he wanted them right where they were. It was over 2 hours before I could finally get them back in their rightful places.

This afternoon, he took pictures off the wall in the living room and laid them out on the floor for no apparent reason. As I was rehanging them, he asked me why I had taken them down. When I told him I hadn’t, he said the kids must have done it. I didn’t even bother to explain we were the only 2 people at home. Then he slipped out the front door and proceeded to go down the steps (which he is NOT allowed to do). I found him sitting on the steps calmly cleaning his fingernails. Bear in mind, he NEVER goes outside unless we have a doctor’s appointment or someone stops by. When I tried to patiently explain that he is not supposed to go up or down stairs, he got angry and began cussing and yelling at me. Nothing like a scene on the front steps to get your blood boiling. I simply threw my hands in the air and followed behind him as closely as I could.

During dinner, he was insistent he needed to call Richard. It rapidly became a fixation so I told him we would call as soon as he was finished eating. I dialed the number for him and handed him the phone. I was shocked to hear him cheerfully tell Richard how nice it was to meet his wife after all these years. Suddenly, I realized he didn’t recognize me at all. I’m not sure who he must have thought I was prior to that. The next couple of hours were spent trying to explain to him that he had met me for the first time today, that he has known me for 31 years and that I have lived here with him for the last 3. His comprehension of it was completely absent. This went on until suddenly, like a veil being lifted from his eyes, the recognition returned and with it came mortification at his actions.

He doesn’t want to use his walker all of the sudden and he gets angry when he is reminded of it. Yesterday, he pushed it into me on purpose. Today he actually lifted it and swung it into the back of my knees, while yelling, “If I want to use the f*cking thing I will!” It almost knocked me off my feet. If I roll it toward him, he either pushes it back at me forcefully or he snatches it away and bangs it on the floor. He is a petulant child about it. It has never been an issue before. He uses it because he knows he needs it. Surprisingly, he has been pretty steady without it. But it is a necessity to help prevent falls and he DOES have to use it.

This disease batters and bruises the heart, mind and soul (and occasionally the body). It sucks the breath right out of you. It takes you by surprise at every turn until you are exhausted and drained. It frequently leaves you dazed and confused. Now, all of this is from the caregiver’s perspective. Imagine for a moment what it must be like to be the person with the disease. Go ahead, just try. Never mind, you can’t and neither can I.

Dark Clouds Over My Head

I have seriously debated whether or not I should write about the following subject. It seems too, well, personal somehow. But I committed myself to being forthright and honest here. As much as I wish it didn’t, it bugs the heck out of me. And I can’t help wondering if anyone else has experienced such a thing…


As children we all have crushes, at some point or another, on an adult who in some way takes care of us or is kind to us. Teachers, preachers, doctors, nurses, neighbors, family friends, etc… they are all targets for admiration, affection, idolization, etc.


Dad is like a child in so many ways. Some are cute. Some aren’t. This crush he has is some of both, but mostly it’s just plain embarrassing. He will profess his undying love for me multiple times a day. He proposes at least once a day (and he is serious). When I gently remind him that I am married to his son, he usually asks me why I would marry Johnny (Johnny is his brother who died at least a decade before I married into the family). I point out I’m married to Richard (his youngest son) and he tells me I should get a divorce and marry him.

When he talks about me to others, he makes me sound like I am perfect. Perfect is something I am clearly NOT. In his eyes, I can do no wrong but that becomes a weighty responsibility in its own right. I make mistakes all the time. I make poor decisions. I am stubborn to a fault. I can be a downright bitch. But Dad never sees any of that because Alzheimer’s has given him the gift of “rose-colored glasses”. He sees what he wants to see about everything and everybody. If the situation is more than the glasses can handle, he simply forgets all about it. I find it very embarrassing for anyone to suggest perfection in another human being.

He is grateful for all I do and communicates it profusely. Now please, don’t get me wrong. It is wonderful to know that someone… anyone… really, truly, honestly appreciates the things you do for them and for others. But being told dozens of times a day is an embarrassment in itself.

I could go on and on here about specific incidents that have made me feel VERY uncomfortable. But, I won’t. Instead I want to focus on the way I handle the whole crush thing. I am gentle and slow my speech and movements down so that he can more easily follow. I thank him (for compliments and proposals alike) and point out that I am his daughter-in-law. He invariably gets sad and says, “I know but I love you and I can’t live without you.” And that, Folks, is why they call it a CRUSH.


I know there is no real solution for the situation. I know he can’t understand just how embarrassing it is for me (and would be for him, if he were cognizant). I know I can’t stop him from any of it. I often wonder if it’s wrong of me to wish I could. I remind myself I should be grateful for these sweet, loving, docile moments (and I’m sure I will be one day). But, right now, they are shadowed too heavily with the clouds of his infatuation.

Turns Out I'm Only Human After All

I read an article this morning that really made me stop and evaluate a few things, “Compassion Fatigue Strikes Family, Even Animal Caregivers” by SUSAN DONALDSON JAMES | Good Morning America. The article states that thousands of Americans are suffering from compassion fatigue, a term used to describe the symptoms of secondary post-traumatic stress caused by caregiving.

Caring for others too much can hurt, according to the Compassion Fatigue Awareness Project, no matter how old you are or in what capacity you're providing care. "You take on the pain of others and suffer, bottled up, angry and suppressing feelings," said project founder Patricia Smith. "Your impulse is to rescue. You don't have any personal boundaries, but you become isolated and lose your self-care in the process."

Without paying attention to their own needs, caregivers can turn to destructive behaviors. "It's a natural consequence of stress," said Smith. "In healthy caregiving you are 100 percent present in their care with empathy and compassion. But it's unhealthy when things in your own life are not resolved and you take on their suffering as your own."

More than 65 million Americans, about 29 percent of the population, is providing care for someone who is chronically ill or disabled and spend an average of 20 hours a week looking after a loved one, according to the National Alliance for Caregiving in collaboration with AARP.


Just last night, I melted down emotionally and could not stop the flood of tears that washed down my face. I was on the phone with a friend and I admitted that I find the pain of others quite overwhelming sometimes. I said I wished I could just stop caring so much. I was informed I couldn’t do that because it is WHO I am.
When I got off the phone, I felt a serious need to apologize for breaking down. I mentally kicked myself for allowing the day to “get the best of me”, for temporarily losing control in the face of severe adversity.

I looked back over recent text messages from friends and I realized that when I’m asked “How are you doing?” my replies usually revolve around Dad, Peggy (the 89 yr old lady I work for as an overnight caregiver), the kids, etc. I guess they are my barometer. But I also noticed the number of times certain friends have responded, “But, how are YOU doing?” I know they are genuinely concerned but I don’t want to burden others with my feelings.

I usually reply, “I’m fine, just tired.” There you go, I admit it. I am suffering from Caregiver Fatigue (CF). I also admit to suffering from Superman (or in my case Superwoman) Complex. I find it nearly impossible to admit that life overwhelms me sometimes. I would much rather convince the world and myself that I can handle anything, anytime. I can’t stand to let, what I perceive to be, my weaknesses show except to a VERY select few. This, of course, becomes a factor in the never ending cycle of CF.

I have spent my whole life caring for others. I have always put the needs and wishes of others before my own. I honestly wouldn’t have a clue how to behave any differently. It IS who I am. There comes a point where even I have to realize that it can wreck your emotional health (and in some cases, your physical health as well).

Yesterday, I started my day, after an almost sleepless night with Peggy, to find that she is growing weaker instead of better. (A couple of weeks ago her Home Health nurse recommended that it was time to bring hospice in. Her daughter, who is also her power of attorney, is vehemently against the idea, stating that her “girls”, meaning we caregivers, can handle it). Here, I will go on the record and say that the additional help would be most welcome for all of us.

Add to that… getting potentially bad news and seriously bad news from two different people closest to me.

Then, I spent several hours listening to Dad tell me he thinks “it would just be best to go ahead and die”. If that weren’t enough, he seemed to take great satisfaction in coming up with various ways he could “end it himself”. As much as I know it is his Alzheimer’s talking, I couldn’t help getting upset by it. Not to mention being completely frazzled by trying to keep 4 children out of the room so they would hear as little as possible of what he was saying.

Ok, so reading back through my day yesterday gives me pause. I have every right to fall apart occasionally. I have every right to feel sadness and pain. Maybe, if I claim those rights and get off my own back, I will be able to deal with the stress and fatigue a bit better. I am doing the best I can with all I deal with and I need to give myself a break from judging myself so harshly. I need to stop being my own worst enemy and get off my back a bit. Because in the end, I have to remind myself that I am only human.

Sidebars and Med Changes

I think we’ve established that Alzheimer’s is frustrating at best. But sometimes, the sidebars are even worse. In January, Dad’s primary physician and I decided we needed to change his anti-depressant. He had gotten to the point where he was sleeping an average of 19-20 hours a day. When he was awake, he was deep in the throes of a crushing depression. Frequently, he would cry but couldn’t tell me what was wrong.

At the same time, the decision was made to switch him from Aricept 10 to the new Aricept 23. ARICEPT does not cure Alzheimer's disease. All patients with Alzheimer's disease get worse over time, even if they take ARICEPT 23 mg. But it has proven effective in many cases, to slow the progression of the disease. For those who respond, ARICEPT 23 mg may take several weeks or longer to work. Knowing all of this, we began the new drugs.

Since the switches, Dad has been sleeping less and has been more alert. His outbursts of tears are fewer and fewer. He has had fewer delusions and seems to be clearer minded. The down side is, as he frequently remarks, he “feels like shit”. After about 10 days on the new medications, he insisted he needed to go to the hospital. I had just begun cooking dinner so I turned everything off and sat down beside him. No matter how hard he tried, he couldn’t tell me what the problem was or why he wanted to go to the ER. I decided it was in his best interest to do as he asked.

I loaded Dad and all 4 kids into the car (I dropped the kids of at my husband’s work. I am thankful that I didn’t have to take them with us and thankful that my husband helps when he can) and off we went to the emergency room. When we arrived, I couldn’t tell them any better than he could what the problem was. As soon as he was settled into a room, I stepped out to speak to the doctor. I explained that he has Alzheimer’s and about the recent med changes. With great patience, they began running blood, urine and feces tests. Several hours later, it was clear that his test results were good. They explained to him that the medication changes were probably responsible for the way he felt and that it should improve in 4-8 weeks.

The following week we had an appointment with his kidney doctor. Dad vehemently told him his complaints (he believed that was why we were there). I asked if, perhaps, we should consider changing back. The doctor assured us that he was better off on the new anti-depressant than the old one (in terms of kidney damage) and that it would take several weeks for his system to adjust. Dad was NOT reassured at the news.

We are now over the 1 month mark and he still tells me daily that he feels bad (my wording not his). I keep trying to remind him that we have another month to go in the transition. All of his lab results are amazingly good considering his many health conditions. I wish I could fast forward time for him so that he would feel better, but I can’t. I have to believe that this is all for the best and that the doctors are correct when they say he will start feeling better soon. Sometimes, it is impossible to know what the right thing to do is, but I have to keep trying, praying and believing. There is simply nothing else I can do.

Balls in the Air

When we are born they take care of us. They feed us and change us and see to our constant needs. They keep us safe and teach us right from wrong. They hold us when we are frightened and comfort us when we are hurt. They don’t ask for anything in return, they do it all because they love us.

Being a family caregiver to someone with any form of Dementia is the most difficult job you will ever have. You have to step into the role of parenting a parent or grandparent. We do for them, as they did for us, because we love them.
Like a baby, they often cannot express themselves well enough to tell where it hurts or why they are frightened. They rely on us to make it better. They are no longer capable of knowing right from wrong so we must gently guide them in the right direction. They have no concept of what is safe and what is not so we must do all in our power to keep them from injury. It can drain every bit of energy from you, leaving you exhausted almost constantly, in a much more wearing kind of way than being a new parent.

There are always times when you will be exasperated. For example, when Dad brings me a handful of light bulbs (removed from every lamp in his bedroom) and says he doesn’t understand why they all burn out at the same time. A couple of times a week, at least, he accidentally turns off the wall switch and suddenly, they no longer work. We have been over this more times than I can count but he just doesn’t understand. So, I smile and put them all back. With the flip of a switch, his world is momentarily right again. And I am an undeserved heroine.

The examples of exasperation are so great in number I could easily write an entire book on that subject alone. So can any caregiver. It is a common bond we all share along with exhaustion, worry, prayer, at times anger, and frustration… the list is never-ending.

Then there is the other side of the coin, the rewards we get from what we are doing. The love we give and receive in return, the joy at the tiniest of accomplishments. The satisfaction of doing something right, something that prolongs the life of someone we love. Here too, the list is never-ending.

We caregivers are jugglers. And we sometimes drop the ball. We wouldn’t be human if we didn’t but the trick is learning to not beat ourselves up for it. The people in each of our lives who never pick up the ball to begin with are the ones who are losing. They will never know how much they have missed. Odds are, they will never care. Some people care too much. Some people don’t care enough. That’s just the way it is.

As for me, I’m just trying to keep my head held high and my balls in the air. And if I shed a tear or two along the way, I know it is alright. I will wipe my eyes and keep going for as long as I am needed.

"Where's Shari?"

I didn’t think I’d be back this soon, but here I am. I belong to a couple of Caregiver support groups (all via internet since most of us can’t get out of the house). On Wednesday, I posted on one of them in an attempt to express something most of us (caregivers) have been through at one time or another. I am copying and pasting it exactly as it was posted…

Some days are good. Some days are not so good. And then there are days like today...
"Where's Shari?" "I'm right here, Dad."
"Where's Shari?" "I'm right here, Dad."
"Where's Shari?" "I'm right here, Dad."
"Where's Shari?" "I'm right here, Dad."
"Where's Shari?" "I'm Shari, Dad."
"Oh."


Unless you have walked in the shoes of someone who loves and cares for someone with Alzheimer’s, you can’t possibly know how much this hurts. Nor can you imagine how painful it is to watch happen. Please understand this went on for most of the afternoon until almost dinner time. We had been at this for several hours when I posted. Please reread the first line of the post carefully. I wasn’t saying today was a good day or a bad day. I really hope no one else thinks I was implying anything other than it was what it was.

Someone I have come to think of as a friend was a bit harsh in their response and I will be honest enough to admit: I was taken back by their words. I completely understand that it must be the most painful thing ever to love a spouse as much as my friend loved his only to lose them to this horrendous disease. I can’t relate to that, and God willing I won’t ever have to but, I care for the only father I have had in my life for the last 20+ years. For me, this is tough enough to deal with. My heart goes out to my friend but anyone who is dealing with this terrible disease should have a right to occasionally be frustrated. I read and reread my own post trying to see where I had complained (as I felt he was saying to me). I am copying and pasting his response but I am removing his and his wife’s name as it is not my right to divulge personal information about anyone in any of my groups…


“The day will come when you will look at days like this as good days...the last two years for my wife were days that she was non responsive and hardly opened her eyes...I would have welcomed the exchange you report...”


Many of the comments that followed were supportive and loving but just as many were people talking to “my friend” (with no mention of the post itself). As a rule, I rarely post on any of the groups I’ve been involved with and I suddenly remember why. For every loving, supportive person out there, there are just as many people who want to knock others down or simply ignore them. Personally, I just plain don’t like the odds. I have a few people in my life (very few) that I DO talk to about my day-to-day world. While they can’t completely comprehend it, they support me unconditionally. Every caretaker needs at least one person who is capable of unconditional love in their lives, someone other than themselves. To be honest, I don’t think my friend intended anything other than to express his opinion but, at the time, I felt he negated mine. The downfall of being a caregiver is sometimes being too sensitive. I'm sure, for me, this was just one of those times.

Later That Evening
As many of you know, I work part-time as an over-night caregiver. For the most part, it works well with Dad’s schedule. I am able to get him settled for the night and I am home before he wakes in the morning…usually. After the day I had with Dad not knowing who I was, but asking for me constantly, I was already tired when I left for work.

The lady I care for was released from the hospital (after her second bout of pneumonia and a urinary tract infection this year) just hours before I arrived. When I got there, I was informed she was trying to decide if she needed to go back to the hospital because she was so weak and dizzy. It took me 2 hours to convince her she should be after being hospitalized for nearly a week. Between her falling asleep and 9am, she had to go to the bathroom 7 times. She had a very bad night which included wetting the bed 3 times (change sheets and gown, put back to bed, do loads of laundry) and wetting the floor twice (nothing like scrubbing the carpet at 3am). When she was awake, she wouldn't let me out of her sight but kept telling me to do things and get things that required me leaving the room. Then she would call out, "Shari, Shari, Shari, SHARI!" She doesn't even take a breath in between and gets louder as she calls me.

The Next Morning
When I got home Dad was trying to call the police because, he insisted, everybody lies to him and hides things from him and he wanted the police to come "put the dirty bastards" out of his house! Then he told me an elaborate story about Richard pulling a gun on him last night and threatening to kill him so he could "run things" (which, of course, never happened). It took me an hour to get him settled down and to get him to stop cursing at me and shaking his fist in my face. It was difficult trying to clean the kitchen, put together a meal for him, get him to climb onto the scale, take his blood pressure and pulse/ox, record everything and get his meds all while he ranted and raved.

When he woke up from his nap and he didn't know who I was again. As a safety precaution, I sent the kids downstairs to watch TV. I am so glad I did. He apparently had a dream that shook him up and became convinced that EVERYONE is out to get him (me included). He was angry and belligerent, telling me stories that made no sense. Like a fool, I tried to reason with him and explained as gently as possible the many reasons why none of these things could have happened. He yelled at me to shut up. I tried to reassure him and he brushed me off. He slammed his hand down on the arm of his chair and struggled to his feet. At that point, I decided a breather for both of us was in order. I cocked my head and announced I heard “one of the babies” (they are 3 and 5) crying and said I should go check on them. As I started to leave the room, he grabbed my ponytail and yanked it, nearly pulling me off my feet. When I stumbled backwards, he did, too. He landed in his chair with a “plop” and tears welled up in my eyes, the pain in my head secondary to the pain in my heart.

Concern flooded his. “Are you feeling ok, Sweetheart?” he asked as if nothing extraordinary had happened.
“I’m fine, Dad. I’m just tired,” I admitted with a deep, shaky breath. “I have to check on the kids.”
“I’ll be here when you get back,” he smiled so innocently. “Hurry back, ok?”
“Sure, Dad, quick as I can,” I replied before running downstairs and locking myself in my bathroom to cry for a minute…or two. And before I could even blow my nose for the second time, I heard him say, “Where’s Shari?”