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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
Happy Summer!!!
9 years ago
Showing posts with label Dementia. Show all posts
Showing posts with label Dementia. Show all posts
Monday, December 1, 2014
Wednesday, November 12, 2014
Wednesday, November 5, 2014
Saturday, October 11, 2014
Tuesday, October 22, 2013
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!"
Wednesday, July 31, 2013
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
Monday, November 5, 2012
Grief: Adrift on a Sea That Has No Direction
I knew it was coming long before anyone else did. He and I talked long and often about his desire to go to Heaven. We read the Bible and prayed over it together. He reaffirmed his faith in the Father, the son and the Holy Ghost. In our own ways, we prepared one another for what was coming… that Dad was going… soon. Over the last couple of weeks of his life, I silently grieved as I watched him slipping further away.
I never could have imagined that I would feel two entirely different types of grief. It was impossible for me to prepare myself for the overwhelming sense that I have lost a child. No one ever mentioned that I might feel this way. When you are the caregiver of someone who suffers from the latter stages of Alzheimer’s, you are caring for a child in so many ways. This child is entirely dependent on you for everything. You are solely responsible for cleaning, changing, dressing, feeding, teaching, protecting and loving them.
When you suddenly lose that child that’s inside the parent, there is a void that is staggering. How different your life becomes. How different my life became. For the first time in 3 years, I can leave the house without making sitting arrangements. I can go to the grocery store and not buy the staples that were such a part of his daily diet. (I can’t bring myself to go down the ice cream aisle for fear of dissolving into tears at the sight of his favorite tubs of vanilla.) I no longer have to go to the pharmacy here (seriously, I use to go at least 4 times a week).
I can’t begin to tell you how much I miss hearing him say, “I want my mommy.” I even miss the times he acted out because at least he was here to do it. On the morning of him being gone a week, I awoke in tears. I was saddened by the thought that it was the longest I had been apart from him in 3 years. I was blown away by the thought that each day would irrevocably take us further apart.
Before I had time to adjust to these changes, God moved me hastily forward. Dad died on Tuesday. The following Thursday, Mama passed out and fell. She busted her knees (both knees with chronic problems) because she went straight down on both knees as she lost consciousness. The impact was hard enough to cause compression fractures in 3 vertebrae and she broke 3 toes. I was there that night. I couldn’t have dreamed I would stay a week and a half. I couldn’t have guessed at the number of questions that would be answered while I was home.
Life is already changing at lightning pace. Mama needs more help than she would ever admit. We have a lot of loose ends with our home, jobs, school, etc. We have finally come to the conclusion that we are going to approach life from a rather unorthodox angle. I am going to be home in Florida from Saturday night until Tuesday morning. It will allow me to work my regular Sunday and Monday nights at Peggy’s and take care of the many things that are requiring attention at home. It will enable me to have time with Richard, Jeremy, Jordyn, Melissa, the kids, etc. Then I will be in Gulfport from Tuesday afternoon until Saturday afternoon with Mama. It will give me a chance to have the best of both worlds.
I am home now. For the first time in 3 years, I am in our own home. As much as I miss Dad, I do NOT miss the daily reminders that this was his home and we were just guests here! It’s odd to realize I don’t know if I’ll ever be a fulltime resident here again or not.
For a long time, people have asked me what I was going to do when Dad died. I never had an answer because I didn’t know what life would have to offer me. Now I do know. At least for now, I will be dealing with cancer as well as the aftermath of dealing with dementia.
Wednesday, October 24, 2012
Because I Love You
IF YOU ARE FAINT OF HEART PLEASE DO NOT READ THIS POST
I want to remind anyone reading this that it is a diary… my diary. I write from my perspective about my experiences. This post may be more graphic, more brutal, more intense, than what I usually write but death is graphic, brutal and intense. If you decide to continue I will point out that I have left out many events and details between the last post and this one. Because, sometimes, it is more than enough to simply live it.
It is 2:00 in the morning here. Today is Tuesday Oct. 23, 2012. Dad's blood pressure (BP) has fallen to 90/61 (at last reading) with a heart rate of 130 (It's been above 120 since 7:00 am yesterday morning). His oxygen saturation is down in the lower 50% range. His temperature is 97 degrees even and he is currently breathing approximately 30-32 breaths per minute (bpm). I have increased the oxygen to 3 liters. He is in a coma now, as his body is slowly shutting down. I was blown away to discover that his kidneys are still functioning. It's only surprising because he only had about 40% function to start with. I totally thought they would be among the first organs to fail.
Dad appears to be gently snoring as I sit here writing this. But sounds can be deceiving. The soft sound is actually the beginnings of the death rattle and he is beginning to experience small bouts of apnea (pronounced pauses in breathing). His lungs are beginning to show signs of having fluids in them (the lower lobe of the right being worse than the left). His hands are held in the same position he has been holding them since I wakened on Friday morning. His circulation is slowing down. His feet are like ice though his hands are still very warm. Cyanosis (something that causes discoloration to appear in certain places on the human body as life slips away) has begun to appear, shades of purple and blue are appearing on his knees, across the bridge of his nose and on his upper lip. Under his fingernails the color seems to deepen more each time I look at them. His head is held almost rigidly in place but his jaw is slack, the correct term is that it has "dropped". He has breathed only through his open mouth since last Friday. His tongue is a purplish hue pushed toward the back of his mouth which causes the snore.
I know he is not suffering, but I am, as I watch him... as I listen to him... as I wait with him.
That reminds me of a time when he was hospitalized (there were so many of those). Because he was being discharged (he had been admitted through the ER in his pajamas a couple of nights previously), I had run home to get him clothes. As I walked in the house, the phone began to ring. It was Dad and he had no memory that I had just left him ten minutes before. He thought he was at a movie theater and he wanted a ride home. He was impatient because he thought he had been there waiting for me all afternoon. When I assured him I would be there in just a minute, he began to cry. Again he insisted that he was tired of waiting and he just wanted to go home and eat. He then shouted at me, "I am sitting here waiting, waiting, waiting, BECAUSE I love you!" The entire situation was founded in the delusions of a demented mind, but those words have replayed themselves a number of times since they were originally hurled at me. They have been an odd litany for me over the past few weeks, but never more so than throughout this seemingly endless night. My mind screams, “Dad, I am sitting here waiting, waiting, waiting, BECAUSE I love you!”
It's 4:00 am. That means time for vitals, assessments, and all the medical stuff again. Well, no significant change in any of the numbers, only his BP has dropped a bit. However, the physical changes are pronounced. His fingers are now turning shades of purple in addition to his bluish fingernails. His eyes and cheeks are suddenly sunken and hollow. His breathing is erratic and the bouts of apnea are worsening. I take great consolation in the fact that he is in absolutely NO pain, he is in his own home instead of a cold institution, and that there isn't a nurse alive who could love him as much as I do or care for him as gently.
6:00 am and the sun is finally rising. We have made it through another night. Morning brings with it more rigidity to his worn out body. The blood in his feet is gathering at the back of his heels (called pooling) and he is developing flat spots where they rest against the mattress. The signs are slowly coming together. His BP is the highest it has been since midnight (which is still abnormally low for him). His feet are cold now as his body temperature begins to drop.
At 8:00 am his blood pressure has dropped significantly again. His breathing pattern has changed drastically. His breaths per minute have slowed down slightly. The bouts of apnea have lessened for now. There are no fluid sounds in his throat and he is back to a slight snore.
9:00 am if you didn’t know what the shadow of death looked like you would probably think he is simply sleeping.
10:00 am and everything is changing now. His breaths per minute are down to about 20. His oxygen saturation is down to 46%. His pupils are fixed and have begun to dilate. I have bumped the oxygen up to 4 liters. I know we are nearing the end of his life. I repeatedly assure him that Mom is waiting for him and it is okay to go join her. I tell him frequently that I love him and it is finally time to go. There is nothing more I can do.
Noon brings major changes. His blood pressure has fallen to 79/43. His pulse is at 46 beats a minute. His body temperature continues to fall. I know in my heart that I will not be checking his vital signs at 2:00 pm. I whisper my goodbye in his ear and leave him alone with his daughter. I know how much she needs this time with him. It is her time to say goodbye, to read him psalms and to pray with him.
At 1:30 pm I am on the phone with one of my nephews when Richard rushes up and says I need to check on Dad. ”Get your stethoscope,” he shouts as I toss him my phone mid sentence and rush to Dad. As I approach the bed, I see that he is still breathing… barely. I listen to his heart beating very faintly. I put my left hand on his now cold forehead. He took three breaths and his heartbeat faded away. At 1:35 pm Dad’s soul left his body and he is finally at peace. He is finally reunited with those who have gone before him. Most importantly, he has left behind the Alzheimer’s that robbed his mind. Now he is once again whole.
Monday, October 22, 2012
In These Final Hours
I have felt a presence these last few hours so strongly I have glanced around rooms…
A mere whisper of movement, a tiny breeze that touches my skin to leave a shiver in its wake…
So strongly I have felt it, I called out your name softly so as not to disturb… either of you.
I watch him sleeping and marvel at the sense of peace I feel wash over me…
At the peace I see erasing the lines time and life have chiseled into his face…
I feel comforted to know that you await him with open arms… anxious to be by his side once again.
Like you, I have loved him… and cared for him… I have devoted this part of my life to him…
My arms feel empty at the thought of him preparing to take wing and fly away from me…
My heart overflows as I feel you hovering nearby, eager to begin your next chapter… with him.
I bow my head and pray knowing that the time to depart his life here on earth draws ever nearer…
I am honored to be here with him, with them, privileged to have had them call me daughter…
I am humbled by the love they still share and blessed to have borne witness to its enduring power…
There will be dancing on the clouds of Heaven soon, while a host of angels sing and rejoice…
Before long this precious father-in-law of mine and his beloved bride will finally be reunited…
Never again to be separated by… time… space… life… or death… together for all eternity…
together they will forever soar free.
Monday, October 15, 2012
"Why Won't You Let Me Go?"
“Who are you?”
“What are you doing?”
“Why are you touching me?”
“Get away,” (slap, slap, slap)
“Stop!” (slap, slap, slap) “Stop!”
(struggle, slap, struggle) “Help! Call the police!”
“Get me a phone they are holding me hostage…”
(Sob) “I want my Mommy. Please.”
(shaky hand grips my wrist)
“Why won’t you let me see her?”
“Why are you doing this to me?”
(shaky hand wipes wet eyes)
“I just want to go home.” (body shudders once)
“Why won’t you let me go?”
Momentary Leap Into the World of Lucidity
“What time is it?”
(struggling attempt to rise)
“What can I do to help you today?”
(eyes focus on me, clear and comprehending)
“I miss my wife.”
“Do you think I will ever get to see her again?”
“How did everything get so fucked up?”
(shaky hand reaches for me)
“I know you didn’t sign up for this.” (sigh)
“I don’t understand why you have stayed.”
“I want you to know I’d be dead without you.”
(squeeze tightly) “Please don’t leave me, okay?”
(eyes search mine) “Can I ask you a question?”
“Why won’t you let me go?”
Sunday, April 22, 2012
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.
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.
Saturday, April 21, 2012
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.
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.
Friday, April 6, 2012
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.
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.
Friday, February 24, 2012
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.
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.
Tuesday, February 21, 2012
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.
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.
Friday, February 17, 2012
"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?”
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?”
Sunday, February 12, 2012
But I Love Him
I know it’s been a while since I’ve posted. Things have progressed quite a bit since I was here last. Most days, I can’t write a word because the reality feels so harsh. Dad’s memory has obviously worsened. His ability to care for himself has lessened. Getting through the depression that set in just before the holidays has been impossible to describe. This normally non-emotional man had taken to daily bouts of tears. He frequently asks me how I would feel if everybody I loved died before me. I can’t begin to imagine.
In January, I sought help from his primary physician. In an attempt to address these problems, he was taken off Namenda and moved from Lexapro to Zoloft. The Aricept 10 was replaced with Aricept 23. So far, the changes have been rough. While he seems a bit clearer most days and his depression has lessened considerably, he does not feel well and can’t articulate how or why. We have had follow-up visits with his primary, his kidney doctor, and the ER (Dad insisted I take him though he couldn’t say why). They have assured me that we simply need to get through the 4-6 week medication adjustment and we should see a drastic improvement in his overall sense of well-being. Side effects from both of the new drugs include a general sense of feeling ill, loss of appetite, etc. I often wonder if it’s worth it but the doctors insist it is. Because I do see signs of improvement, I am doing just that for now.
When I agreed to come here and care for my mother-in-law and father-in-law, I couldn’t possibly have imagined all that it would entail. No one ever can. The cooking, cleaning, etc. are the easy parts. But I have discovered we all have our breaking points. Recently, I sat on the laundry room floor and cried after I put the 8th load of “soiled” laundry into the washer for the day. Then there was the night I cooked dinner and Dad asked me if there was anything he could do to help 69 times. I’m serious 69 times, I counted. He can’t complete the simplest of tasks and if I do ask him to do something, he usually forgets it a second later. His willingness to help is overwhelming at times. I am blessed because I know how grateful he is for every little thing I do but it can be a bit much at times.
Often, he feels as if nobody cares (though he always points out I’m the exception). Frequently, I wonder if he is right. I know that he is loved but that palls compared to being feared. When I married into this family, I was rather shocked at the reverence this matriarch and patriarch were given by their family and friends. People flocked around them. They were social butterflies at the height of flight back then. Now, Mom is gone. Seldom does the phone ring, and if it does, it is usually not for him (though frequently it is regarding him for example, doctors and such). The visitors we have are our friends, not his. Granted, most of his friends have passed on but you would think his minister or someone from the church would at least drop by occasionally. And I won’t even go into the deplorable lack of communication from his family outside this house.
I know it’s hard to deal with someone who tells the same stories over and over and over again. I know it’s difficult to be asked the same things day in and day out. I know it can be virtually impossible to interact with someone who seems so out of touch with reality. But I know it is important to reach out to these people, to help them prolong their tenacious grip. Avoidance and denial so often go hand-in-hand.
I hate that I am his only lifeline. But I love him. I hate this disease that is attacking him. But I love him. I hate that he feels so alone. But I love him. I will continue to love him and help him through it all because it’s the only thing I can do. I will be by his side until the bitter end.
And I will always thank God for giving me the opportunity to do all I am doing. Without Him, it just wouldn’t be possible.
In January, I sought help from his primary physician. In an attempt to address these problems, he was taken off Namenda and moved from Lexapro to Zoloft. The Aricept 10 was replaced with Aricept 23. So far, the changes have been rough. While he seems a bit clearer most days and his depression has lessened considerably, he does not feel well and can’t articulate how or why. We have had follow-up visits with his primary, his kidney doctor, and the ER (Dad insisted I take him though he couldn’t say why). They have assured me that we simply need to get through the 4-6 week medication adjustment and we should see a drastic improvement in his overall sense of well-being. Side effects from both of the new drugs include a general sense of feeling ill, loss of appetite, etc. I often wonder if it’s worth it but the doctors insist it is. Because I do see signs of improvement, I am doing just that for now.
When I agreed to come here and care for my mother-in-law and father-in-law, I couldn’t possibly have imagined all that it would entail. No one ever can. The cooking, cleaning, etc. are the easy parts. But I have discovered we all have our breaking points. Recently, I sat on the laundry room floor and cried after I put the 8th load of “soiled” laundry into the washer for the day. Then there was the night I cooked dinner and Dad asked me if there was anything he could do to help 69 times. I’m serious 69 times, I counted. He can’t complete the simplest of tasks and if I do ask him to do something, he usually forgets it a second later. His willingness to help is overwhelming at times. I am blessed because I know how grateful he is for every little thing I do but it can be a bit much at times.
Often, he feels as if nobody cares (though he always points out I’m the exception). Frequently, I wonder if he is right. I know that he is loved but that palls compared to being feared. When I married into this family, I was rather shocked at the reverence this matriarch and patriarch were given by their family and friends. People flocked around them. They were social butterflies at the height of flight back then. Now, Mom is gone. Seldom does the phone ring, and if it does, it is usually not for him (though frequently it is regarding him for example, doctors and such). The visitors we have are our friends, not his. Granted, most of his friends have passed on but you would think his minister or someone from the church would at least drop by occasionally. And I won’t even go into the deplorable lack of communication from his family outside this house.
I know it’s hard to deal with someone who tells the same stories over and over and over again. I know it’s difficult to be asked the same things day in and day out. I know it can be virtually impossible to interact with someone who seems so out of touch with reality. But I know it is important to reach out to these people, to help them prolong their tenacious grip. Avoidance and denial so often go hand-in-hand.
I hate that I am his only lifeline. But I love him. I hate this disease that is attacking him. But I love him. I hate that he feels so alone. But I love him. I will continue to love him and help him through it all because it’s the only thing I can do. I will be by his side until the bitter end.
And I will always thank God for giving me the opportunity to do all I am doing. Without Him, it just wouldn’t be possible.
Friday, October 28, 2011
Control Thy Anger
October 28, 2011
Yesterday, Dad yelled at Jordyn. I had just picked the kids up from the bus stop and sent them upstairs to fix an after-school snack. I stopped to cycle laundry. Suddenly, I heard Dad’s voice, obviously agitated. I stopped what I was doing and headed upstairs. Dad asked Jordyn, “What is that?” as I came around the corner. Jordyn said, “What, Pop, the microwave?”
I was just in time to see Dad whirl around and step in front of Jordyn. “Don’t be disrespectful, Smartass, I know that’s a f#*king microwave. What is it?” Jordyn was obviously confused by the question. Before I could move to intervene, Dad got toe-to-toe & face-to-face with him. “I will not tolerate you being a smartass to me, Boy!”
As he raised a hand, I stepped in between them, pushing Jordyn behind me. “Dad, he wasn’t being a smartass or being disrespectful. Please stop yelling at him. He doesn’t know what you are asking. Did you mean what he’s cooking?”
His fury was turned my way and I was shocked to see that he was shaking with suppressed rage. “You stay the hell out of this! This is between me and that big kid. I am not going to have anyone being disrespectful to me in my house. You are always sticking up for him and I won’t have it!”
I turned away and moved across the kitchen as he ranted. He suddenly yelled, “Who the hell do you think you are?”
I turned to make sure the question was aimed at me. “I know exactly who I am. I am the person who loves you all. I am the person who is here to take care of you. I am the person who takes care of these children and I am not going to let you treat them this way. They always show you respect, maybe you should try showing them some respect too. I love you but I am not going to tolerate YOU behaving like this to them.” By then, I was starting to shake and I was afraid I would begin to cry so I turned my back to him.
He shouted, “Now you’re being disrespectful to me!”
“You’re right, I am! The difference is, I am an adult. I have a right to show disrespect to another adult. They are children and have to be respectful of you ALL the time. And they are. You think it’s ok to treat them like this because they are children. So while you are telling us what you won’t tolerate in YOUR house, I want us to be clear about what I will not TOLERATE with my grandchildren! Are we clear on THAT?”
Dad stuck his chin out belligerently and said, “I’m hungry. All these kids have food and nobody fixed me anything to eat.”
I sighed, feeling like the root of the problem had just come to light. I began making him a sandwich as he climbed up in a chair at the bar. As quickly as it began, it was over and once I gave him his food, he was complacent again. He ate without speaking then went to his room for a nap as if nothing had happened at all.
Now this is the point that where I admit to being ashamed at myself for raising my voice to him. I am fully aware that his disease directly causes his behaviors and I know I shouldn’t get upset. Trying to balance children and the elderly is hard enough without having Alzheimer’s in the bargain. I am supposed to be the responsible adult around here and I let the disease beat me down for a moment.
This morning when Dad got up, I sat down beside him and put my head on his shoulder. I wanted desperately to apologize for yesterday’s outburst but doubted he would even remember it. I was floored when he stroked my hair and said softly, “I’m sorry I made you mad at me. I never want to make you mad, ever. You are my right arm and I wouldn’t be alive without you. I’m not sure what I did this time but I’m sorry I did it. Ok?”
I looked at him in amazement, “I’m not mad at you, Dad. I love you. And I shouldn’t have yelled at you yesterday.”
“Yesterday?” he asked. “I was talking about our argument this morning.” I didn’t even bother to point out that I had just gotten home from work and he had just gotten up so we were seeing each other for the first time today. I just smiled and asked if he was ready for some breakfast.
Yesterday, Dad yelled at Jordyn. I had just picked the kids up from the bus stop and sent them upstairs to fix an after-school snack. I stopped to cycle laundry. Suddenly, I heard Dad’s voice, obviously agitated. I stopped what I was doing and headed upstairs. Dad asked Jordyn, “What is that?” as I came around the corner. Jordyn said, “What, Pop, the microwave?”
I was just in time to see Dad whirl around and step in front of Jordyn. “Don’t be disrespectful, Smartass, I know that’s a f#*king microwave. What is it?” Jordyn was obviously confused by the question. Before I could move to intervene, Dad got toe-to-toe & face-to-face with him. “I will not tolerate you being a smartass to me, Boy!”
As he raised a hand, I stepped in between them, pushing Jordyn behind me. “Dad, he wasn’t being a smartass or being disrespectful. Please stop yelling at him. He doesn’t know what you are asking. Did you mean what he’s cooking?”
His fury was turned my way and I was shocked to see that he was shaking with suppressed rage. “You stay the hell out of this! This is between me and that big kid. I am not going to have anyone being disrespectful to me in my house. You are always sticking up for him and I won’t have it!”
I turned away and moved across the kitchen as he ranted. He suddenly yelled, “Who the hell do you think you are?”
I turned to make sure the question was aimed at me. “I know exactly who I am. I am the person who loves you all. I am the person who is here to take care of you. I am the person who takes care of these children and I am not going to let you treat them this way. They always show you respect, maybe you should try showing them some respect too. I love you but I am not going to tolerate YOU behaving like this to them.” By then, I was starting to shake and I was afraid I would begin to cry so I turned my back to him.
He shouted, “Now you’re being disrespectful to me!”
“You’re right, I am! The difference is, I am an adult. I have a right to show disrespect to another adult. They are children and have to be respectful of you ALL the time. And they are. You think it’s ok to treat them like this because they are children. So while you are telling us what you won’t tolerate in YOUR house, I want us to be clear about what I will not TOLERATE with my grandchildren! Are we clear on THAT?”
Dad stuck his chin out belligerently and said, “I’m hungry. All these kids have food and nobody fixed me anything to eat.”
I sighed, feeling like the root of the problem had just come to light. I began making him a sandwich as he climbed up in a chair at the bar. As quickly as it began, it was over and once I gave him his food, he was complacent again. He ate without speaking then went to his room for a nap as if nothing had happened at all.
Now this is the point that where I admit to being ashamed at myself for raising my voice to him. I am fully aware that his disease directly causes his behaviors and I know I shouldn’t get upset. Trying to balance children and the elderly is hard enough without having Alzheimer’s in the bargain. I am supposed to be the responsible adult around here and I let the disease beat me down for a moment.
This morning when Dad got up, I sat down beside him and put my head on his shoulder. I wanted desperately to apologize for yesterday’s outburst but doubted he would even remember it. I was floored when he stroked my hair and said softly, “I’m sorry I made you mad at me. I never want to make you mad, ever. You are my right arm and I wouldn’t be alive without you. I’m not sure what I did this time but I’m sorry I did it. Ok?”
I looked at him in amazement, “I’m not mad at you, Dad. I love you. And I shouldn’t have yelled at you yesterday.”
“Yesterday?” he asked. “I was talking about our argument this morning.” I didn’t even bother to point out that I had just gotten home from work and he had just gotten up so we were seeing each other for the first time today. I just smiled and asked if he was ready for some breakfast.
Friday, September 23, 2011
One Week Into The New Medication
Sept. 23, 2011
Well, Dad has been on his new Alzheimer’s medication (Namenda) for a week now. The only real changes I have seen so far, is he sleeps ALL the time. I was told from the beginning that it takes 30 days to get into the system properly and once it’s leveled out, then and only then, will we see any results from it (if we even do). It can’t happen soon enough in my book.
I took Dad to the doctor on Wed. for 4 biopsies. Leaving the house for anything has become very stressful for him. I can only assume that’s what led to his outrageous behavior. On the way to the doctor, we were stopped at a red light and Dad got impatient. He kept shouting, “Go, Buddy!” to the car in front of us. When he didn’t move, Dad leaned over and laid on the car horn. I pointed out that he couldn’t go until the arrow turned green and gently removed his hand. Dad stared out the side window like a pouting child until we began to move. He honestly had no concept of what was happening.
When I was helping him out of the car, he grabbed my breast and said, “I’ve been wanting to do that for a long time. Nice set you got there.” He meant no offense and I took none though it took me by complete surprise. I simply thanked him and pointed out we were late for our appointment. Sometimes, it’s just best to stay calm and let these things pass.
He says and does things lately that make no sense. When a nurse left the room at one point, he announced quite loudly, “You know, she would be pretty if she wasn’t so fat! It makes you wonder if she ever looks in a mirror. ” I tried to shush him because I knew she had to have heard him. I wanted desperately to apologize for his outspoken behavior but I never got the chance. Sometimes, I wish I had a neon sign that would announce to the world, “HE’S NOT MEAN. HE HAS ALZHEIMER’S”! I’ve discovered that people are a lot more tolerant when they understand that he doesn’t understand.
He was never completely clear for the rest of the afternoon and evening but he kind of plodded through til bedtime. After sleeping for a couple of hours, he got up and went to the kitchen to make a bowl of cereal. Halfway through the process, he went to his chair and fell asleep. I went to check on him when I heard him stirring again in the kitchen a short while later.
He was sitting at the bar, painstakingly eating his cereal one shaky, slow bite at a time. I sat down beside him and asked if he was ok. He shook his head and said, “I don’t know where I’ve been or what has happened to me the last few hours. Why can’t I remember anything?”
I am asked this rather frequently and I still find it no easier to explain to him. I tell him it’s his illness. I tell him it makes him forget. I tell him I love him and will be his memory. There is nothing I can say to alleviate his confusion and anxiety.
He is anxious because he knows I am going out of town next week. He understands that my mom is having surgery and I need to go take care of her and my grandmother. But, he is gravely concerned about how he will get along without me for a whole week. Since I moved here, we have never been apart for so long. To be honest, I am worried about his behavior while I’m gone. Since he has become unpredictable at best, he could easily be harder to handle in my absence. I need to be with MY family. I need to be able to help my mom. But I need to know that Dad is as ok as he can be. Maybe I need too much. (sigh)
All I can do is keep reassuring him that he can call me anytime he wants to. I keep my cell phone number attached to the phone so he can always reach me if I’m not here. He is more likely to call me when I’m in another part of the house or out in the yard than he is when I’m out of town. Sometimes he swears he hasn’t seen me all day when I have been out of sight for less than 10 minutes. What I have to do is assure myself he will be in hands that are almost as good as mine (my daughter, Melissa, will be caring for him). She knows what to do, and if she doesn’t, she will call me. I have to do what I have to do and simply pray that all goes well for everyone. As you can see, I'm a bit anxious about it myself. Because...
It is never easy.
Well, Dad has been on his new Alzheimer’s medication (Namenda) for a week now. The only real changes I have seen so far, is he sleeps ALL the time. I was told from the beginning that it takes 30 days to get into the system properly and once it’s leveled out, then and only then, will we see any results from it (if we even do). It can’t happen soon enough in my book.
I took Dad to the doctor on Wed. for 4 biopsies. Leaving the house for anything has become very stressful for him. I can only assume that’s what led to his outrageous behavior. On the way to the doctor, we were stopped at a red light and Dad got impatient. He kept shouting, “Go, Buddy!” to the car in front of us. When he didn’t move, Dad leaned over and laid on the car horn. I pointed out that he couldn’t go until the arrow turned green and gently removed his hand. Dad stared out the side window like a pouting child until we began to move. He honestly had no concept of what was happening.
When I was helping him out of the car, he grabbed my breast and said, “I’ve been wanting to do that for a long time. Nice set you got there.” He meant no offense and I took none though it took me by complete surprise. I simply thanked him and pointed out we were late for our appointment. Sometimes, it’s just best to stay calm and let these things pass.
He says and does things lately that make no sense. When a nurse left the room at one point, he announced quite loudly, “You know, she would be pretty if she wasn’t so fat! It makes you wonder if she ever looks in a mirror. ” I tried to shush him because I knew she had to have heard him. I wanted desperately to apologize for his outspoken behavior but I never got the chance. Sometimes, I wish I had a neon sign that would announce to the world, “HE’S NOT MEAN. HE HAS ALZHEIMER’S”! I’ve discovered that people are a lot more tolerant when they understand that he doesn’t understand.
He was never completely clear for the rest of the afternoon and evening but he kind of plodded through til bedtime. After sleeping for a couple of hours, he got up and went to the kitchen to make a bowl of cereal. Halfway through the process, he went to his chair and fell asleep. I went to check on him when I heard him stirring again in the kitchen a short while later.
He was sitting at the bar, painstakingly eating his cereal one shaky, slow bite at a time. I sat down beside him and asked if he was ok. He shook his head and said, “I don’t know where I’ve been or what has happened to me the last few hours. Why can’t I remember anything?”
I am asked this rather frequently and I still find it no easier to explain to him. I tell him it’s his illness. I tell him it makes him forget. I tell him I love him and will be his memory. There is nothing I can say to alleviate his confusion and anxiety.
He is anxious because he knows I am going out of town next week. He understands that my mom is having surgery and I need to go take care of her and my grandmother. But, he is gravely concerned about how he will get along without me for a whole week. Since I moved here, we have never been apart for so long. To be honest, I am worried about his behavior while I’m gone. Since he has become unpredictable at best, he could easily be harder to handle in my absence. I need to be with MY family. I need to be able to help my mom. But I need to know that Dad is as ok as he can be. Maybe I need too much. (sigh)
All I can do is keep reassuring him that he can call me anytime he wants to. I keep my cell phone number attached to the phone so he can always reach me if I’m not here. He is more likely to call me when I’m in another part of the house or out in the yard than he is when I’m out of town. Sometimes he swears he hasn’t seen me all day when I have been out of sight for less than 10 minutes. What I have to do is assure myself he will be in hands that are almost as good as mine (my daughter, Melissa, will be caring for him). She knows what to do, and if she doesn’t, she will call me. I have to do what I have to do and simply pray that all goes well for everyone. As you can see, I'm a bit anxious about it myself. Because...
It is never easy.
Thursday, September 15, 2011
Hope
September 15, 2011
On Tuesday, we had an appointment with Dad’s primary physician. The pharmacy called him for a prescription refill and he needed to see Dad before he could write it. I was shocked to realize we hadn’t been in to see him since last March! For the fist time in longer than I can remember, Dad’s health has been so stable. We go to a number of specialists… cardiologist, urologist, oncologist, hematologist, gastroenterologist, dermatologist… they monitor what’s going on in their particular fields but his primary keeps an overall picture on his health and mental state.
I went in armed with a list of observations and minor concerns. It didn’t take long for the doctor to decide it’s time for us to add another Alzheimer’s medication to the lengthy list of daily meds. While his health has been stabilizing, his mental state has been rapidly deteriorating.
On Wednesday, we started Namenda (Memantine). ***Memantine is used to treat the symptoms of Alzheimer's disease. Memantine is in a class of medications called NMDA receptor antagonists. It works by decreasing abnormal activity in the brain. Memantine can help people with Alzheimer's disease to think more clearly and perform daily activities more easily, but it is not a cure and does not stop the progression of the disease. (courtesy of PubMedHealth) ***Note that it must be used in conjunction with other Alzheimer’s medications (most frequently, Aricept).
Since it will take 30 days to get the full effects from it, I am watching Dad closely for any changes as well as possible side effects. I hope it can help him (even if it’s only for a little while). Dad is unable to perform the simplest of tasks now. For example, if he decides to take the trash out he may take the can to the back porch and empty it but forget to bring it back inside. Or he may bring it back to the kitchen but forget to put a trash bag in it. Twice he has attempted to put the big swinging lid into the dishwasher and once I found a full bag of trash sitting on his bed. Another example, he tries to set the table but asks at least 4 or 5 times, “How many of us will there be for dinner?” NEVER will there be an entirely correct table setting. Napkins, forks, spoons, (we only use knives when it’s absolutely necessary with Dad and 4 kids at the table) glasses, etc. something is always missing somewhere. And there is a 50/50 chance that he will simply wander back to his chair in the living room mid-task, forgetting what he was doing. To relieve his embarrassment and frustration, the boys go behind him and correct each place as needed and they now make the drinks for everyone.
It is so frustrating to be in the kitchen trying to get dinner for 7 or 8 people ready and hear, “Let me know if there is anything I can do to help!” dozens of time each evening. Knowing that there truly isn’t anything he can do to help without him getting frustrated and confused which leads to hostility and anger. With Alzheimer’s, you are in a constant no-win situation. I can’t imagine anyone who is sweeter or wants more to help than Dad. He is grateful for all that I do and tells me repeatedly every day. He tries so hard to do what he thinks is the right thing, and like a child, he glows under praise and positive reinforcement.
I am hoping this medication will help him enough to allow me to assign simple tasks to him. He NEEDS to feel useful. It gives him purpose and makes him feel like he is a functioning member of our household. It helps to keep him connected. Moderate Severe Stage Alzheimer’s comes equipped with disassociation and my goal is to keep him connected with every aspect of life for as long as possible. Our road is hard but we are walking it together and as long as he lives, I will continue to have HOPE. Hope that he can have a few more really good days and a few less really bad days. Hope that I can slow down the progression of his disease. Hope that he will always know that he is loved…
On Tuesday, we had an appointment with Dad’s primary physician. The pharmacy called him for a prescription refill and he needed to see Dad before he could write it. I was shocked to realize we hadn’t been in to see him since last March! For the fist time in longer than I can remember, Dad’s health has been so stable. We go to a number of specialists… cardiologist, urologist, oncologist, hematologist, gastroenterologist, dermatologist… they monitor what’s going on in their particular fields but his primary keeps an overall picture on his health and mental state.
I went in armed with a list of observations and minor concerns. It didn’t take long for the doctor to decide it’s time for us to add another Alzheimer’s medication to the lengthy list of daily meds. While his health has been stabilizing, his mental state has been rapidly deteriorating.
On Wednesday, we started Namenda (Memantine). ***Memantine is used to treat the symptoms of Alzheimer's disease. Memantine is in a class of medications called NMDA receptor antagonists. It works by decreasing abnormal activity in the brain. Memantine can help people with Alzheimer's disease to think more clearly and perform daily activities more easily, but it is not a cure and does not stop the progression of the disease. (courtesy of PubMedHealth) ***Note that it must be used in conjunction with other Alzheimer’s medications (most frequently, Aricept).
Since it will take 30 days to get the full effects from it, I am watching Dad closely for any changes as well as possible side effects. I hope it can help him (even if it’s only for a little while). Dad is unable to perform the simplest of tasks now. For example, if he decides to take the trash out he may take the can to the back porch and empty it but forget to bring it back inside. Or he may bring it back to the kitchen but forget to put a trash bag in it. Twice he has attempted to put the big swinging lid into the dishwasher and once I found a full bag of trash sitting on his bed. Another example, he tries to set the table but asks at least 4 or 5 times, “How many of us will there be for dinner?” NEVER will there be an entirely correct table setting. Napkins, forks, spoons, (we only use knives when it’s absolutely necessary with Dad and 4 kids at the table) glasses, etc. something is always missing somewhere. And there is a 50/50 chance that he will simply wander back to his chair in the living room mid-task, forgetting what he was doing. To relieve his embarrassment and frustration, the boys go behind him and correct each place as needed and they now make the drinks for everyone.
It is so frustrating to be in the kitchen trying to get dinner for 7 or 8 people ready and hear, “Let me know if there is anything I can do to help!” dozens of time each evening. Knowing that there truly isn’t anything he can do to help without him getting frustrated and confused which leads to hostility and anger. With Alzheimer’s, you are in a constant no-win situation. I can’t imagine anyone who is sweeter or wants more to help than Dad. He is grateful for all that I do and tells me repeatedly every day. He tries so hard to do what he thinks is the right thing, and like a child, he glows under praise and positive reinforcement.
I am hoping this medication will help him enough to allow me to assign simple tasks to him. He NEEDS to feel useful. It gives him purpose and makes him feel like he is a functioning member of our household. It helps to keep him connected. Moderate Severe Stage Alzheimer’s comes equipped with disassociation and my goal is to keep him connected with every aspect of life for as long as possible. Our road is hard but we are walking it together and as long as he lives, I will continue to have HOPE. Hope that he can have a few more really good days and a few less really bad days. Hope that I can slow down the progression of his disease. Hope that he will always know that he is loved…
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