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10 years ago
Thursday, March 22, 2012
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.
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.
Sunday, March 18, 2012
A Step Away From Dementia
I want to take a step away from Dementia (though it is something that both my mother-in-law and my grandmother suffered with). I want to talk about death. I want to talk about life…
As many of you know, I lost my mother-in-law to COPD & Congestive Heart Failure in April 2010. She was hospitalized for more than a week. She was on a ventilator for 5 days before it was finally cut-off. When the respirator was turned off on that Fri, I stayed by her side. The only time I left was for less than half an hour to take Dad home and hand him over to Richard.
One of the hardest things I’ve ever done in my life was to sit there for 24 hours with her, knowing that the end was coming and there was nothing I could do to help. It was unbelievably painful to watch her struggle to take 8 breaths a minute for over 3 hours. The only consolation I had was in knowing the morphine and Ativan she was receiving by IV were ensuring she couldn’t feel a thing. It was explained to me by the nurse that the hospital we were in practiced “Comfort Care”. She carefully outlined what that involved. As a family member, and her caregiver, I had the right to tell them when I thought she was in pain and they could give her extra morphine. They couldn’t do it unless I told them to give her more relief. She explained that it would slow down her breathing and enable her to die more peacefully and completely pain-free.
Another of the hardest things was explaining to Dad that he had to tell Mom it was ok to die. And one of the most beautiful things I’ve ever seen was her doing exactly that after he said it. She died with dignity. The two most profound moments in life are birth and death. There can be beauty in both.
6 months after Mom passed away, my beloved sister-in-law got up on 10-10-10. She fixed herself a glass of milk and a cup of coffee, sat down in her favorite chair, turned on her favorite movie channel, sat back and her heart stopped beating. Not a heart attack, a heart disease that no one knew she had. But the look on her face was one of peace.
On Feb. 28th, my oldest daughter gave birth to a baby girl, 7 weeks early and weighing only 4 lbs 8 ozs. Naturally, I got there as fast as I could. 11 hours later, I saw my new granddaughter for the first time and my heart filled with love. That night as I stood next to my 92 year old grandmother’s bed, she held my hand and said, “I just want to go home, Baby.” She had made similar statements many times in the recent past but this time, I knew in my heart, was different. I shivered as my heart filled with love.
The following morning she had difficulties that brought the hospice nurse out. My grandmother was in end stage COPD, a result of being in Congestive Heart Failure. It was quickly apparent that she was sliding downhill at a rapid rate. No more assisting her out of bed. No more solid food…soft foods and liquids only. All medications were to be crushed and mixed with pudding or yogurt. At 2 a.m. the following morning, I attempted to give Grandmama her meds, unsuccessfully. The nurse-practitioner (a family friend), officially declared that she could no longer swallow anything but liquids and she was removed from soft foods.
By the next morning, Hospice had taken her off liquids as well and it was decided to begin comfort care medications by mouth. Most commonly used is a combination of Ativan and Morphine. It is measured into a syringe and slowly administered under the tongue. It is massaged into the skin by rubbing the cheek, chin, etc. closest to where it is placed under the tongue. There were Certified Nursing Assistant’s there throughout the day but they can’t legally administer the medications. I, as a family member, could. So, I did.
Here, finally, was a gift I could give my grandmother. She had given me so many amazing gifts throughout my life. She gave me the gift of life itself. She gave me my morals and ethics. She gave me the capacity to love unconditionally. I could make a list a mile long but I won’t because many are too obvious for words. I felt overwhelmingly honored to know that I could help her pass painlessly…peacefully…with dignity.
The peace that surrounded me throughout the night showed me a beauty I had never known. I watched her snoring for several hours. I watched her breathing patterns change. I listened as her snoring stopped and her breathing became shallower but quieter. I watched her pulse change as the night wore on and I knew what the changes meant. And I administered her medications, on time, every time.
I knew at 6:00 a.m., when I gave her the last dose of medications, that it wouldn’t be much longer. I was shocked to discover I wasn’t heartbroken to know the end was near. I have never in my life known such peace as I felt at 7:13 a.m. when she took her last breath with my hand resting on her chest. My angel had gone Home. God was with me the entire time…and He was with her. And He got my attention once and for all.
With every turn my grandmother took for the worst over a 36 hour period, my granddaughter took a turn for the better. There is no doubt in my mind that the two were connected. As my grandmother was in her final moments, the baby took a turn for the worst that put her back on the machine we had just gotten rid of. She rebounded quickly after Grandmama passed on. I am blessed to have witnessed such things.
Life and death are completely entwined. They go together hand-in-hand and will for all eternity. You cannot have one without the other. And there is beauty in both. We must simply open our eyes and our hearts to see it…
As many of you know, I lost my mother-in-law to COPD & Congestive Heart Failure in April 2010. She was hospitalized for more than a week. She was on a ventilator for 5 days before it was finally cut-off. When the respirator was turned off on that Fri, I stayed by her side. The only time I left was for less than half an hour to take Dad home and hand him over to Richard.
One of the hardest things I’ve ever done in my life was to sit there for 24 hours with her, knowing that the end was coming and there was nothing I could do to help. It was unbelievably painful to watch her struggle to take 8 breaths a minute for over 3 hours. The only consolation I had was in knowing the morphine and Ativan she was receiving by IV were ensuring she couldn’t feel a thing. It was explained to me by the nurse that the hospital we were in practiced “Comfort Care”. She carefully outlined what that involved. As a family member, and her caregiver, I had the right to tell them when I thought she was in pain and they could give her extra morphine. They couldn’t do it unless I told them to give her more relief. She explained that it would slow down her breathing and enable her to die more peacefully and completely pain-free.
Another of the hardest things was explaining to Dad that he had to tell Mom it was ok to die. And one of the most beautiful things I’ve ever seen was her doing exactly that after he said it. She died with dignity. The two most profound moments in life are birth and death. There can be beauty in both.
6 months after Mom passed away, my beloved sister-in-law got up on 10-10-10. She fixed herself a glass of milk and a cup of coffee, sat down in her favorite chair, turned on her favorite movie channel, sat back and her heart stopped beating. Not a heart attack, a heart disease that no one knew she had. But the look on her face was one of peace.
On Feb. 28th, my oldest daughter gave birth to a baby girl, 7 weeks early and weighing only 4 lbs 8 ozs. Naturally, I got there as fast as I could. 11 hours later, I saw my new granddaughter for the first time and my heart filled with love. That night as I stood next to my 92 year old grandmother’s bed, she held my hand and said, “I just want to go home, Baby.” She had made similar statements many times in the recent past but this time, I knew in my heart, was different. I shivered as my heart filled with love.
The following morning she had difficulties that brought the hospice nurse out. My grandmother was in end stage COPD, a result of being in Congestive Heart Failure. It was quickly apparent that she was sliding downhill at a rapid rate. No more assisting her out of bed. No more solid food…soft foods and liquids only. All medications were to be crushed and mixed with pudding or yogurt. At 2 a.m. the following morning, I attempted to give Grandmama her meds, unsuccessfully. The nurse-practitioner (a family friend), officially declared that she could no longer swallow anything but liquids and she was removed from soft foods.
By the next morning, Hospice had taken her off liquids as well and it was decided to begin comfort care medications by mouth. Most commonly used is a combination of Ativan and Morphine. It is measured into a syringe and slowly administered under the tongue. It is massaged into the skin by rubbing the cheek, chin, etc. closest to where it is placed under the tongue. There were Certified Nursing Assistant’s there throughout the day but they can’t legally administer the medications. I, as a family member, could. So, I did.
Here, finally, was a gift I could give my grandmother. She had given me so many amazing gifts throughout my life. She gave me the gift of life itself. She gave me my morals and ethics. She gave me the capacity to love unconditionally. I could make a list a mile long but I won’t because many are too obvious for words. I felt overwhelmingly honored to know that I could help her pass painlessly…peacefully…with dignity.
The peace that surrounded me throughout the night showed me a beauty I had never known. I watched her snoring for several hours. I watched her breathing patterns change. I listened as her snoring stopped and her breathing became shallower but quieter. I watched her pulse change as the night wore on and I knew what the changes meant. And I administered her medications, on time, every time.
I knew at 6:00 a.m., when I gave her the last dose of medications, that it wouldn’t be much longer. I was shocked to discover I wasn’t heartbroken to know the end was near. I have never in my life known such peace as I felt at 7:13 a.m. when she took her last breath with my hand resting on her chest. My angel had gone Home. God was with me the entire time…and He was with her. And He got my attention once and for all.
With every turn my grandmother took for the worst over a 36 hour period, my granddaughter took a turn for the better. There is no doubt in my mind that the two were connected. As my grandmother was in her final moments, the baby took a turn for the worst that put her back on the machine we had just gotten rid of. She rebounded quickly after Grandmama passed on. I am blessed to have witnessed such things.
Life and death are completely entwined. They go together hand-in-hand and will for all eternity. You cannot have one without the other. And there is beauty in both. We must simply open our eyes and our hearts to see it…
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.
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