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/

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!"

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.

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.

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.

Fixations

October 17, 2011

Fixated. Such a simple little word but it has the ability to drive a caregiver crazy. With Alzheimer’s comes the single-minded focus of fixating on something until it is the only thing you can think about, talk about or worry about. It can be a real problem or an imaginary one. It can be something big or it can be something so small a normal person would never even give it a second thought. The only way to deal with it is to just plain deal with it. You have to find a way to put their mind at rest (until they find something else to fixate on). Above all else, you have to reach to the depths of your soul to find a source of strength and patience to draw from.
Dad has an atypical fibroxanthoma (AFX). It is a rare cutaneous spindle-cell neoplasm, malignant tumor on the top of his head. With him, the concern comes in because he suffers from rapid growth skin cancers. He has been diagnosed, over the years, with every type of skin cancer there is and in every case, they have grown at super human speed. Right now, it is the object of his fixation.
“When are they going to do something about this thing on my head?” Dad asks this question 100 times a day.
100 times a day I reply, “Nov. 7th.”
“What is it? I don’t understand why they can’t just cut the damn thing off and get it over with.” His questions and comments regarding the whole situation seldom vary.
I have explained repeatedly that they are going to have to do a particular type of surgery (Moh’s) and that was the earliest they could schedule it. What I don’t explain to him is the concerns related to me by the doctor. The tumor is large and they believe it has infiltrated the outer portion of his skull. The surgery will be trickier than most but it will be successful. They will get it all… they always do. Odds are in favor that we will discover another spot of cancer that will need to be removed… we always do.
So far today he has already asked me about it twice and he’s only been up for an hour. I will continue to pray for patience as I give him the same old answers. I will look forward to Nov. 8th when he will awaken and ask me what the bandages on his head are for. In fact, I think for today, I will simply look forward and smile.

April 30, 2011

This past week has been emotionally charged beyond belief. On April 24th (Easter Sunday) we marked the 1year anniversary of Mom’s death. Now, 6 days later it is her birthday and the anniversary of her memorial service.
Dad asks daily, “What day is this?” or “What is today?” As he is asking, he is checking the day and date on his watch (as if to confirm that we are in agreement). On good days, he will only ask a few times. On bad days he may ask dozens of times.




THE WAY OUR DAY STARTED


I got up this morning to find Dad sitting silently in his chair. As soon as he saw me he said listlessly, “What day is this?” I replied around a sudden lump in my throat, “April 30th”. He took off his watch and looked at it, turning it this way and that, reading the date from every possible angle.
“There use to be something important that happened in April. I think it was on the 30th. It isn’t one of the kids birthdays because none of them were born in April.” He looked at me totally bewildered, “Why can’t I remember? I know it was something important.”
I swallowed hard and cleared my throat, choking out, “Dad, today was Mom’s birthday.”
“My mom’s birthday? No, I don’t think so. You mean your mom’s?”
I shook my head, “No. I mean your wife’s. Today is her birthday.”
The sadness oozed from his very being as he slumped further down in his recliner. A shaky hand wiped over his face. “I knew it was something important. How could I forget that?” He turned his pain-clouded eyes to mine, “I miss Del as much right this second as I did the day she died. How could I forget her birthday?”
I leaned down and hugged him, “It’s not your fault, Dad. Your illness just makes you forget things sometimes.”
He hugged me back, patting my hair and said, “I don’t want to forget her. Del was my whole life and I don’t know what to do without her but I know I don’t want to forget her.”
I wanted desperately to assure him that he wouldn’t. But in that moment, we both knew there is every possibility that is exactly what will happen. With tears filling my eyes, I walked into the kitchen to start a pot of coffee.

As the coffee maker began to drip, I asked Dad if he was ready for some breakfast. He said he thought he’d rather wait for a while. A couple of minutes later he came around the corner and asked, “Hey, Sweetheart, what day is this?”
“April 30th,” I answered quietly with my back to him.
“That’s right. I knew that.” He started back toward the living room, asking, “What’s next?”
“Nothing, Dad. We don’t have anything at all to do today. It’s Saturday.”
“Have you gotten the newspaper yet?” he asked as he sat back down in his chair.
“Not yet. Would you like me to go get it?”
“No, I’ll get it. It will give me something to do besides sitting around being homesick for my wife.”
I told him I thought it was a great idea. That I was sure a little fresh air would be good for him and it was shaping up to be a beautiful day outside.

He struggled from the chair and headed for the front door. “Dad, don’t forget your walker.” I called out to him as I poured myself a cup of coffee.
He turned around and snapped out, “I know that! I do NOT need you to remind me all the time! I am perfectly capable of remembering to use the damn thing. I am perfectly capable of remembering A G.D. LOT of things!”
He grabbed his walker, snatched it off the ground, turned back toward the door and thumped the wheels on the floor. Once again he started for the front door but just before he reached it, he turned and went down the hallway toward his bedroom.
After a few minutes he came back and asked if I had gotten the newspaper yet. I told him I hadn’t and suggested he might like to get it since it was such a lovely day. He immediately agreed as he started for the door. He reached to unlock the front door, looked over his shoulder at me and asked, “Sweetheart, what day is this?”




A COUPLE OF HOURS LATER

On the weekends I strip Dad’s bed and do his linens and laundry. Sweep and mop his bedroom and bathroom, etc. Dad is very proud that he makes his bed every day. Since this is a function that he has appeared to maintain quite well, I only ever do it when he is ill or on laundry day. I had noticed that it was even neater than usual this past week.
I went to strip his bed and the top quilt was turned back (highly unusual). I picked up the pillows on his side of the bed and stood there staring in disbelief. The bed had OBVIOUSLY not been turned down since I had made it last weekend. I was floored.

I went into the living room and sat down beside Dad. “Hey, Dad, can I ask you a question?”
“Of course.”
“Is there a reason you haven’t slept under your sheets this week?
He smiled a most serene and charming smile, “Sure. I figured if I didn’t mess it up nobody would have to make it up and nobody would have to do laundry. I was trying to help you. Did I do something wrong?”




THIS AFTERNOON

I was cleaning the upstairs bathrooms, I had just finished the toilet, sink and tub in the boys room and gone to do Dad’s before finishing picking up both bathrooms. On my knees cleaning the toilet, I heard Dad say from behind me, “Oh, shit.”
I apologized and said he could get in here I could easily come back and finish later. He insisted he would just go use the other bathroom.
Almost 30 minutes later, I finished and took the wastebasket with me to empty. Dad was sitting in his recliner calmly flipping through a magazine. As I approached him, he glanced up. “I’ve just been sitting here looking at this magazine I found in the front bathroom. It’s rather interesting.” I leaned down to see what he was reading when he said matter-of-factly, “I think some of these girls might be sluts.”

As he said it, he angled the cover so I could clearly see it. Dad noticed me looking and told me, “It’s called Hooters. They seem to like to show them off too. I wouldn’t usually look at something like this but at least it helps pass the time.”
I smiled and nodded as I went to the kitchen. Dad continued to flip through the pages. When he got to the end of it, he turned it back to the front cover and casually began going through it again. Periodically, he would make little comments under his breath. I was delighted to see something capture his attention for so long.

He mentioned it a couple of times, “I found this magazine in the front bathroom. It’s called Hooters. I’m not sure what to do with it.”
I decided I would put it up somewhere when he left the room (out of sight, out of mind) but when he finally did, the magazine was nowhere to be found. And I’m certainly not going to ask him about it.


One thing is definite, there is seldom a dull moment with Dad around! (see picture toward bottom of the page)

Hold Onto It

April 28, 2011

I’ve said it before and I am going to say it again, “You can not reason with a demented mind. It is absolutely, positively impossible.” I promise you that any attempts to do so will result in a battle fueled by frustration for all parties concerned. No one will walk away victorious. The key is, knowing when it’s time to walk away.
Whenever possible, I try to change the subject but the level of his current fixation determines whether that will work or not. At other times, a distraction will work to sidetrack his thoughts. But if all else fails, there is simply no other choice…it’s time to walk away.
Sometimes when I retreat, I feel as if I am running away but I’ve come to understand that in reality, it can become simply a matter of my survival. When you are caring for someone you love, you have to remember to first take care of yourself. Nobody is going to do it for you, anymore than they will volunteer to take the weight off your shoulders. That’s just the way it is.
There is nothing easy when you are trying to function 24/7 with someone who has Alzheimer’s. It isn’t easy for the person living it and it isn’t easy for the person taking care of them. Hell, the bottom line is, it isn’t easy for anyone who comes in contact with it!



Dad has been more confused, more disoriented, more depressed, more uncommunicative, more apt to fall into favorite repetitive stories, and even less steady on his feet for the past few weeks. His lab work is good and he isn’t on any new meds that would be causing any more side effects than usual. His weight, Pulse Oxygen and Blood Pressure have been running consistently in very good range for him. He eats well and sleeps well. He is mentally deteriorating much faster now while he seems to have, in many ways stopped his physical deterioration.
He has been much more antagonistic than usual. He acts as if he is spoiling for an argument sometimes. I don’t know if it’s the Alzheimer’s or if he is somehow aware that Easter Sunday 2011 made it exactly 1 year since Mom died. It could easily be a combination of both or something all together different.

I can’t believe it’s been a whole year. I can picture the last 24 hrs of her life so clearly, down to the minutest details. I have often wished over this past year that I could erase parts of it. At the same time, I have prayed that I will never forget others.
Dad doesn’t have that luxury. The Alzheimer’s that plagues him is in control. It takes away as many good memories as it does the bad. Over time it changes details, people, names, dates, times, places, and events. It spins deluded, convoluted, and quite often nonsensical memories that trail in its wake.

Dad is starting to have a lot more episodes where he doesn’t recognize the family that lives locally or even in his home. Often, he becomes agitated for no apparent reason. Until recently, it was fairly easy to isolate things that disturbed him and once they were corrected to his satisfaction, he would settle down. Lately, his reasoning makes no sense so it’s virtually impossible to figure it out or to correct it.
The hardest of all is watching him becoming more delusional. Tonight at dinner, he told me an elaborate story about how he was once a weatherman. It started out that he had to learn all about weather as a pilot, “Not during the war of course because the military told you all you needed to know about the weather. It was their job to worry about it. All you had to worry about over there was doing your job and keeping your ass from getting shot down so you could go home.” I was floored when his story turned from the usual wartime memories to end up with him explaining that he was a weatherman on T.V. “for quite some time until they brought in that bald headed guy I can’t stand (Jim Cantore)”. If I had been a stranger listening to the tale he was telling, I would probably have believed him because he sounded so sure of the details. He even went so far as to say that he hasn’t liked Jim Cantore since the day he met him and knew he was going to be his replacement. “Of course, that was long before your time.” He assured me. I nodded and asked questions when it seemed he wanted me to but mostly, I just let him spin his fantasy until it played out. Sometimes, the greatest gift we can give as a caregiver is to simply listen.

At another point today, Dad wanted to know where everybody was. I explained that Melissa had taken all four of the kids home to her house. He quietly said, “I never would have thought you were that kind of woman.” Startled, I asked what he meant. He replied, “I never would have thought you were the type of woman who would give your children to somebody else to raise. I would think you would want to do it yourself.”
“Dad, three of those children are Melissa’s. Jordyn is mine. We take care of hers when she’s at work and she takes care of them and Jordyn when she isn’t. We help each other out.”
“I know that!” He interjected sharply before he shook his head sadly, “Who helps her with them? She shouldn’t have to take care of all those children by herself! That’s too much for her to do.”
“We do.” I said softly. “We help her a lot, Dad. And she helps me a lot by taking Jordyn and giving us a break from taking care of kids. I think we both need a break sometimes.”
“I love those children and I think most of them are the cutest kids I have ever seen. I want them here. They belong at home with you. Besides, she doesn’t have any help over wherever she is with them.” His agitation steadily grew, “Children should be with their mother!”
“Dad,” I quietly tried to reach him, “They are. Cameryn, Ayla and TyTy are Melissa’s children. Jordyn is mine. I am helping her raise her children and she is helping me raise mine. We are a blended family. I thank God every day that we have most of my children and grandchildren living near us but sometimes we all need a break. Melissa’s children need to be with her at their home.”
He rose from his chair and glared at me as he excused himself to go to the bathroom. On his way out of the room, he said quite clearly, “She shouldn’t have to do it alone. And if you were a good mother, you wouldn’t let her. You would be raising your own damn children.”

With tears in my eyes, I made my way downstairs. It was lost. Not a battle… not a war… but a piece of my heart. There are things about Alzheimer’s you cannot escape. There are things you cannot ignore. There are things you will never be able to forget. There are things that break your heart and attempt to shatter your very self. If you don’t have strength to draw on from the very depths of your soul, my advice to you is to get out. Put your loved ones in the hands of someone who can be detached to some degree because this a job that will breathe joy into you at times and suck it right out of you at others. I promise you this, it can be very hard to pick up the shattered pieces and go on sometimes. But if this is what you are meant to do, you will do it because it’s the only thing you can do. And if you are doing this all because you love someone then the strength you seek is already inside you. Find it… use it… hold onto it!

Life on the Inside Looking Out While Living on the Outside Looking In

I am frequently told things like, “I don’t know how you do it,” or “I couldn’t do what you do,” or “I would go crazy in your shoes.” Then there are the questions like, “Don’t you ever get tired of it?” and “Doesn’t it get to you, doing all you do?” and “What are you going to do when he passes away?”
This is from someone who is living their entire life on the inside looking out while living on the outside looking in. This one is about just me…

“I Don’t Know How You Do It”
There are several answers to this. I get lots of help from above. I pray for wisdom, strength and patience constantly. I have faith that I’ll be shown the answers. I BELIEVE I can make it all work. And it honestly usually does.
My youngest daughter, Melissa, and I have created a blended family that is mutually beneficial to everyone. I have sole custody of my 12 yr old grandson. She is a single mother of three children ages 10, 4, and 2. We have found a way that works very well for us. She works 3 days a week (full time) so I have all the kids and Dad on those days. The other 2 days of the school week, the boys either stay with us or stay with Melissa depending on a number of factors. Weekends she keeps all of the kids at her house. This gives Dad (and me) a much need break from the chaos of children. I KNOW I couldn’t manage without her help. I KNOW she couldn’t manage without mine. That’s an amazing gift! And on the rare occasions when I leave town to recharge my batteries, I know that she can manage things in my absence (and has).
I have found a kind of peace within myself that I didn’t even know existed before we moved here. It’s a place where I can go and draw strength. It’s a place I can believe in myself. I can believe in what I’m doing because I KNOW it’s the right thing to do.

“I Couldn’t Do What You Do”
Trust me when I say you can’t possibly know how you would react until the situation is at hand. I wasn’t sure I could do what I do. When the situation first presented itself, I was terrified. I hated myself for stopping to ask myself if I was willing to give up my entire life as I knew it to move here and take care of, not one but both, of my elderly in-laws. I will never forget how I cried uncontrollably as I questioned why it was falling on my shoulders. And then I realized it was because it was something I only I could do in our situation.
My husband was gone less than a week after his father called to ask for our help. He moved in with them while I stayed behind to pack up our lives and get ready to move our son and grandson yet another time (we thought we were going to settle where we were after a lifetime of many moves). Six weeks later, practically everything we owned was placed into 2 storage units, I had handed our family cat (of 8 years) over to my daughter, kissed her and 3 of my grandchildren good-bye, hugged various friends that I haven’t seen since and we drove off to a whole new life.
That’s when I knew I HAD to do what I do. The funny thing is, looking back now, I know there never really was a choice for me at all. They called. They needed us. We came. And I don’t regret it for a second. I love my life and I love what I’m doing because I love the people involved unconditionally. I don’t know how to love any other way. When you love somebody, you will do anything and everything you can for them. So yes, I bet you could do what I do.

“I Would Go Crazy In Your Shoes”
If you honestly think I don’t have days where I go crazy, stick with that and quit reading this post right now (illusion is a magical thing). Trust me, there are plenty of days when I go crazy. I just try hard not to let most of them show.
For example, take today. In addition to a normal day with Dad and the kids, my son and his fiancée got stuck for a babysitter. Now, I will never pass up a chance to keep my future grandson (he’s 19 months old and adorable!) so of course I said yes. While dinner was cooking, I took the two youngest (still in diapers) downstairs for a diaper change. We then hustled upstairs to get dinner for 7 on the table.
After dinner, I was cleaning the kitchen when my 4 yr old granddaughter announced that the baby had peed in Pop’s chair. About that time he ran into the kitchen so I snagged him up. He was dry as could be but there was a definite odor about him. I shouted back, “Baby Kam didn’t do it.”
No sooner had the words left my mouth than I saw 2 yr old Ty streak past minus his shoes, socks, and pants. Snagging him up I instantly knew he was the culprit. Laughing, I asked, “Can’t you guys just stay clean and dry for a little while?” and headed for the stairs.
As I passed Dad finishing his desert at the dining room table I heard him say, “Oops,” Instantly a rumble came from the vicinity of his chair and he grinned at the babies in my arms. “I guess not.” He rose from the table and said with a twinkle in his eyes, “You change them and I’ll change mine.” I barely made it down the stairs before I burst out laughing.

Then you have the kind of crazy where you’ve been asked the same question 40 times in a day or heard the same story a dozen times in a span of a few hours (only its told slightly different each time because details are so easily forgotten), it’s the kind of crazy where you want to scream to make it stop. There are a lot of different kinds of crazy and you get to see brief glimpses of them occasionally. But that’s when I stop and pray for wisdom, strength, and patience.

“Don’t You Ever Get Tired of It?”
Honestly? The answer is sometimes, for a brief moment in time, maybe. But it doesn’t last long. I get tired of fighting against an insidious disease. I get tired of watching Dad struggle mentally and physically. I get tired of not being able to go where I want to, when I want to. Because Dad requires 24 hour a day constant care, I get tired of not being able to leave the house at all most days. I think more than anything, I get tired of just plain being tired.

“Doesn’t It Ever Get to You, Doing All You Do?”
You can bet your ass it does. It would get to anybody. But you simply do what you have to do.

“What Are You Going to Do When He Passes Away?”
Obviously, this is my least favorite question of all, first and foremost because I am sitting here trying to extend his life. Look, let’s face it. We all die. In fact, from the moment each of us is born, we are all dying. But I don’t think anyone actually wants to dwell on that fact too much. We are here to live.
I can’t answer this question. I have no clue where we will go from here. I thought we were settled just before the series of events took place that brought us here. I know we will have to sell the house and find a new place to live. I know that I won’t go too far from Melissa and her children, or Jeremy, Amanda & Baby Kam. I know I will have to find a job and figure out how to work it around my family. I know we will cross each bridge as we come to them because there is a time and place for everything under the sun. Right now my time and place is here and now and that’s all I can handle at the moment.
I had a career in Retail Mgmt., Restaurant Mgmt., was a district manager and then owned two businesses of my own (simultaneously while keeping first 3, and then 4, of my grandchildren full time at work with me). I am thinking of a career move toward caring for the elderly. There are not enough honest, dependable caregivers in the world. I enjoy the medical aspects of it all and I enjoy spending time with the elderly. I think I would be happiest if I could find a way to help protect them.
Who knows, maybe we will stay in this area. Maybe we won’t. I guess I’ll have to get back to you on it all sometime. I am living my entire life on the inside looking out while living on the outside looking in. For now, I just need to focus on the living. So that’s what I am doing.

I'm On a Soapbox (Let Me Vent)

There is no logic to Dementia or Alzheimer's. There is no consistency and so far there is no solution. There is no cure. There is little hope. At best, there are a myriad of drugs that can slow its progression but most of them are extremely expensive and many are slow to get approval by the FDA. Worse yet, most of them aren’t capable of making a drastic difference, they simply slow things down a little. Alzheimer’s is insidious beyond belief.
Recent changes to Medicare Prescription Plans have made a great many of these types of medications ineligible for coverage. Others are so ridiculously priced to begin with that the portion you are left paying out-of-pocket (for a 30 day supply) costs more than what an average family spends on groceries for a week. Dad has a monthly injection I give him that is $1485 PER SHOT! With his old insurance, his co-pay was $50 a month. With the new Medicare Plan his co-pay is currently $791.

Introducing Medicare Part D otherwise referred to as Donut Hole Insurance. There are 4 stages to this nightmare insurance policy brought to you by the US Government (via a letter Dad received a few days ago)…
Stage 1- Yearly Deductible is around $300 (we had that met by the 2nd week of Jan.) Stage 2- Initial Coverage the plan covers part of the cost and you cover the rest (in our case they cover about 35%) until you reach app. $3,000 year-to-date “total drug costs” (we’re over ½ way there). Stage 3 Coverage Gap (which I estimate we will enter within the next 4 weeks)- You will receive a discount on brand name drugs and you pay ONLY 93% of the costs on generic drugs. You stay in this stage until the amount of year-to-date “out-of-pocket costs” reaches app $5,000. At this rate it shouldn’t take us very long to move to Stage 4- Catastrophic Coverage. During this payment stage, the plan pays most of the cost for your covered drugs. You generally stay in this stage for the rest of the plan year.
***Please note the ambiguous wording given by them. Phone calls are even more frustrating because everyone insists this is the best solution for someone who takes as many different medications as Dad does. Currently, he takes 29 different medications orally and 2 different types of injections at home.

How exactly does the government expect to prolong the lives of the elderly when they allow the pharmaceutical companies to pillage, rape and plunder the American people? How do they expect the elderly to pay their rent or mortgages, buy groceries, while paying outrageous costs for medical care and prescription medications? How can they hold their heads up knowing that there is no such thing as a decent government run nursing home in this country (and if there is, I stand corrected and am amazed)? How can they close their eyes to the injustices, neglect and abuse that the American elderly are subjected to without punishing the offenders to the highest letter the law will allow? I often wonder what these people do with the elderly in their own lives (parents, grandparents, etc.)

If I were an elected official, I would bend over backward for this dwindling segment of the population. I would bust my ass to keep them alive as long as possible. You see, unlike subsequent generations, the elderly still have faith in the government. They always pay their taxes, they don’t ever cheat the government, the elderly go out of their way to follow the very letter of the law. They have unwavering devotion to our country and yet most government offices seem to relegate them to the back burner in every case. You get better health care assistance if you are a crack addict with 5 kids living in the projects and selling sex for hire than you do if you are elderly.

It infuriates me to see the way so many Americans treat the elderly, when they aren’t ignoring them entirely. Our nursing homes are more often than not substandard and the funding is so sparse (no matter who it’s run by) that there is a shortage of both Registered Nurses and LPNs (the ones there are, are overworked and usually underpaid), a shortage of doctors who give a damn, a shortage of Caregivers that have more than the minimum qualifications. I can’t think of a single country in the WORLD that treats the elderly so poorly!

I am angry and I am going to keep making it my business to demand answers from the medical people we encounter regularly, our insurance companies, Medicare, Social Security, the Federal Government in general.
I am going to continue to fight a government that allows crimes against the elderly go unpunished. A system that will allow someone to neglect or abuse an elderly person and then let them open a business that provides elderly care is a system that needs to change. I am only one small voice but I will S-C-R-E-A-M to be heard!

Fight FOR Them Not WITH Them

April 3, 2010

In the natural course of aging, it is common to lose your appetite. But, it is not natural for you to get so hung up on losing weight that you refuse to eat. This is a problem that we have been fighting with Mom for a while now. She was diagnosed as having an eating disorder. Back in Sept. she weighed in at a healthy 159. By the first of the year, she was down in the lower 120’s and was thrilled about it. By Feb., she had dropped to 112 (that’s the lowest she got to). I sought help from the doctors. No matter how many times and ways we tried to explain to her that losing weight was putting a bigger strain on her heart, she still refused to eat much. Most of the time she claimed her dentures were bothering her.

They tried a couple of different medications (that did NOT work at all). Every morning we weigh in, and every morning, she got more and more excited as the numbers went down. Every day, she began to eat less and less.
In desperation, her general practitioner finally prescribed liquid Estrogen. Now think about this for a second. It makes sense. The #1 side effect in women on birth control pills is weight gain. So, when all else fails, drastic measures must be taken.

Within 48 hours of beginning the new med, she started developing an appetite. She insisted food suddenly tasted good. Ironically, we haven’t heard the dentures mentioned since we started the Estrogen.
Now, bear in mind, a month ago I was lucky if she ate a total of 2 cups of solid food a day. Now, I can’t get her to stop eating. Here is an example… this morning she ate a bowl of cereal and a piece of toast but was still hungry. I made her 4 pancakes that she promptly inhaled. She wanted more, but I told her she couldn’t have them unless she finished her pills (this is still a constant struggle with her). As soon as I said it, she devoured the pills and ate 3 more pancakes. Her weight is up to a solid 130 and she has more energy than she has had in months.

I have discovered that the will to live gets stronger when you are eating a healthy diet. I have also discovered the art of compromise works well. I don’t fight with her because it drains my energy and makes her twice as stubborn. Instead, I fight for her (sometimes with her knowledge and sometimes without).