Some people are just champions. I am struck by this woman's impact in life and now in death. Just so you have all the fact about the winningest D-1 women's basketball coach in the NCAA, check out this video are article on Ms. Summit at: http://abcnews.go.com/Sports/pat-summitt-legendary-womens-basketball-coach-dead-64/story?id=40136499.
Ms. Summit was diagnosed at age 59. She did not immediately announce her disease - undoubtedly taking the time to process her own reaction and working through is with her family. My husband was diagnosed a year after she was - when he was 48. She became the famous face of Early-Onset Dementia - Alzheimer's type, for us.
Indeed, I feel like she left us with a puzzle legacy. She gave an interview once - talking about needing to retire earlier than she expected. She mentioned keeping her mind as sharp as possible with puzzles. Paul has so many puzzles - received as gifts from thoughtful people and ones we have purchased to challenge him and keep his mind active. He struggles with most of them now - but they still remind me of that interview.
Ms. Summit's legacy continues through the impact she had on NCAA basketball, on all her players, and most likely in her son. Tyler, I am so sorry for you loss. For your 5 years of loss. And, for those of us who only had the honor of observing her work from afar, perhaps her biggest legacy was the Pat Summit foundation dedicated to Alzheimer's Research and care for those diagnosed. Please check our her website and consider giving to support the ongoing impact of her work and life: http://abcnews.go.com/Sports/pat-summitt-legendary-womens-basketball-coach-dead-64/story?id=40136499.
I wish her family and friends and players great peace as you prepare her memorial and remember what was important about her life.
And, thank you Pat Summit for all you have done to help all of those of use touched by Early Onset Dementia!
Wednesday, June 29, 2016
Sleep Please
Please don't think I am asking for Paul to sleep. He sleeps a lot! No, I am begging for sleep and I don't know how to get it.
Facts:
1. My husband needs to sleep.
2. My husband needs to sleep whenever his brain tells him to sleep.
3. My husband snores when he sleeps.
4. My husband snores like a freight train.
5. My husband has night terrors when he sleeps.
6. My husband believes his night terrors are real.
7. My husband reacts physically to his dreams.
8. My husband flails, kicks, punches, and grabs while dreaming.
9. My husband sometimes reacts poorly to being awakened to quiet him.
What does all of this mean for a wife? Horrible sleep.
What does all of this mean for a caregiver? Usually between 3-4 hours of sleep per night.
Ugh!
Thanks for letting me complain!
Facts:
1. My husband needs to sleep.
2. My husband needs to sleep whenever his brain tells him to sleep.
3. My husband snores when he sleeps.
4. My husband snores like a freight train.
5. My husband has night terrors when he sleeps.
6. My husband believes his night terrors are real.
7. My husband reacts physically to his dreams.
8. My husband flails, kicks, punches, and grabs while dreaming.
9. My husband sometimes reacts poorly to being awakened to quiet him.
What does all of this mean for a wife? Horrible sleep.
What does all of this mean for a caregiver? Usually between 3-4 hours of sleep per night.
Ugh!
Thanks for letting me complain!
Tuesday, June 28, 2016
The Real Costs of Alzheimer's Care
According to sites such as Alz.org, the costs associated with Alzheimer's will range between 200 billion and 310 billion dollars over the next decade. Mind-numbing.
These dollar amounts project direct costs for nearly 5 million people in the US currently diagnosed with Alzheimer's disease.
For the sake of our little math problem, we will say that in 2016, the direct costs for those 5 million people were $250 billion. That is billion - with a B. BILLION.
Wait a minute while I try to find the calculator app on my phone... Wait, my calculator app on my phone won't go to the billions. Hold on. I will try old-fashioned math.
Nope... got a Ph.D., but struggling to keep track of all those zeroes. Hold on - I have another idea.
Okay - got it. That's $50K per Alzheimer's patient yearly, right?
Wait - no - that CANNOT be right.
Paul is not even in Assisted Living right now I in order to live - to keep up with his care needs, I have to try to earn around $100K per year. That is just to survive, folks - not to thrive.
And, Paul has medical insurance and prescription drug coverage.
How does this add up. Most literature about Alzheimer's disease care and Assisted Living estimates between $65K and $90K per year - so why is this estimated cost so low?
Oh - I get it. We are free. We caregivers. Right, we come free of charge. At least that is what society tends to think.
Yep, click on those websites again - such as the Alz.org site.
Are you one of those 15.9 million caregivers? Are you putting in some of those 18.1 Billion free hours of caregiving for a person with Alzheimer's disease? Are you saving our nation's insurance companies part of the $221 BILLION dollars in free care?
I doubt they are sending you a THANK YOU CARD. So I will...
Thank you. I know this is really hard work. You worry. You are tired. You injure yourself sometimes just trying to move your loved one. You get spat at, yelled at, blamed, and picked on - by the person for whom you are providing care, nonetheless. Then, other loved ones criticize how you provide care or when you provide care or ignore the fact the burden is on you. You forget to pick up your own medication from the pharmacy, but you always remember the meds for your loved one. You eat fast food. You miss activities with your friends. You forgot how to date. You missed your class reunion. You stopped dreaming about your life and started worrying about your loved one's next day. I see you. You are valuable. You need time. You deserve to get compensated for your work. And - you deserve a medal! You matter. You are worth more than to be ignored. You are a good person. You will survive this. I am with you. I don't know how to fix this. But it deserves to be fixed. THANK YOU!
These dollar amounts project direct costs for nearly 5 million people in the US currently diagnosed with Alzheimer's disease.
For the sake of our little math problem, we will say that in 2016, the direct costs for those 5 million people were $250 billion. That is billion - with a B. BILLION.
Wait a minute while I try to find the calculator app on my phone... Wait, my calculator app on my phone won't go to the billions. Hold on. I will try old-fashioned math.
Nope... got a Ph.D., but struggling to keep track of all those zeroes. Hold on - I have another idea.
Okay - got it. That's $50K per Alzheimer's patient yearly, right?
Wait - no - that CANNOT be right.
Paul is not even in Assisted Living right now I in order to live - to keep up with his care needs, I have to try to earn around $100K per year. That is just to survive, folks - not to thrive.
And, Paul has medical insurance and prescription drug coverage.
How does this add up. Most literature about Alzheimer's disease care and Assisted Living estimates between $65K and $90K per year - so why is this estimated cost so low?
Oh - I get it. We are free. We caregivers. Right, we come free of charge. At least that is what society tends to think.
Yep, click on those websites again - such as the Alz.org site.
Are you one of those 15.9 million caregivers? Are you putting in some of those 18.1 Billion free hours of caregiving for a person with Alzheimer's disease? Are you saving our nation's insurance companies part of the $221 BILLION dollars in free care?
I doubt they are sending you a THANK YOU CARD. So I will...
Thank you. I know this is really hard work. You worry. You are tired. You injure yourself sometimes just trying to move your loved one. You get spat at, yelled at, blamed, and picked on - by the person for whom you are providing care, nonetheless. Then, other loved ones criticize how you provide care or when you provide care or ignore the fact the burden is on you. You forget to pick up your own medication from the pharmacy, but you always remember the meds for your loved one. You eat fast food. You miss activities with your friends. You forgot how to date. You missed your class reunion. You stopped dreaming about your life and started worrying about your loved one's next day. I see you. You are valuable. You need time. You deserve to get compensated for your work. And - you deserve a medal! You matter. You are worth more than to be ignored. You are a good person. You will survive this. I am with you. I don't know how to fix this. But it deserves to be fixed. THANK YOU!
Monday, June 27, 2016
Sometimes He Still Knows What is Important
This is a picture of our son-in-law, Taylor, and our daughter, Shelby. I do not know why I don't just call Taylor our son. That is what he feels like to us - a bonus son! Taylor recently graduated from Eastern Oregon University with a Bachelor's degree in Fire Sciences Administration. Yay Taylor! Taylor worked hard to earn his degree. And, he worked nearly full time over the last few years to afford the luxury of an education.
Paul always valued education. He would say he never really had the patience or the brain power for classroom learning. He was gifted - though. At one point in our marriage, to help with his employment, he earned an Associate's degree in Industrial Arts. He used to be able to learn nearly any physical skill or task. He was an amazing welder. He was a plumber. He was an auto mechanic. He was an artist. He could build anything. He could fix anything.
He wanted our children to be able to go to college. When we both realized (at a fairly young age) that our career paths were not going to help us save for tuition for three children, we hatched a plan. He supported us while I went to school - all the way through school. Then, we both found jobs at universities. In doing so, we were able to get tuition remission for our children.
Good plan - right. Aren't we smart!
Well, our kids had other plans. Each was interested in pursuing fields outside of the traditional world of academia. Zach (oldest son) became a tattoo artist. Shelby (pictured here) became a talented stylist and cosmetologist (thanks for the eyelash extension, Baby Belle). Wyatt (our youngest and most like his dad) became a mechanic. I was a bit disheartened when this first occurred. Now, of course, I realize I can get tattoos for free. I get free hair cuts, coloring, and styling for life. My car will always run! We are really proud of our kids. Shelby even runs her own business for goodness sakes. But I think we always wanted to see one graduate from college.
So, when Taylor finally told us he was walking in graduation, our hearts leapt. And then my worry set in. EOU is five hours from our home. Paul cannot even tolerate going to the doctor. He certainly can't handle sleeping in unfamiliar places. How were we going to this ceremony? Would I have to go alone? We talked about all of this as a family.
It was Paul who made the final decision. He said, simply, "I am going."
So we hatched a plan. We would all sleep in the same hotel room so Paul was safe and always had someone with him. If he woke up scared at night, he might soon recognize three familiar faces. We brought extra medications to help calm him. We made sure he ate, and drank water, and stayed warm.
And, what a challenging day it was. The graduation was outdoors. The weather predictions kept changing. In the end, we ended up getting rained on and then sunburned. That is Oregon for ya! Regardless, we got to celebrate Taylor and all his hard work and see one of our children graduate from college.
Paul knew how important this was and together we made it work. Taylor does not say much. He is a quiet and peaceful guy. He rarely expresses much emotion. But I know - just like I know my own name - Taylor was so happy Paul was there with him.
Thank you Lord for these moments of blessing!
Paul always valued education. He would say he never really had the patience or the brain power for classroom learning. He was gifted - though. At one point in our marriage, to help with his employment, he earned an Associate's degree in Industrial Arts. He used to be able to learn nearly any physical skill or task. He was an amazing welder. He was a plumber. He was an auto mechanic. He was an artist. He could build anything. He could fix anything.
He wanted our children to be able to go to college. When we both realized (at a fairly young age) that our career paths were not going to help us save for tuition for three children, we hatched a plan. He supported us while I went to school - all the way through school. Then, we both found jobs at universities. In doing so, we were able to get tuition remission for our children.
Good plan - right. Aren't we smart!
Well, our kids had other plans. Each was interested in pursuing fields outside of the traditional world of academia. Zach (oldest son) became a tattoo artist. Shelby (pictured here) became a talented stylist and cosmetologist (thanks for the eyelash extension, Baby Belle). Wyatt (our youngest and most like his dad) became a mechanic. I was a bit disheartened when this first occurred. Now, of course, I realize I can get tattoos for free. I get free hair cuts, coloring, and styling for life. My car will always run! We are really proud of our kids. Shelby even runs her own business for goodness sakes. But I think we always wanted to see one graduate from college.
So, when Taylor finally told us he was walking in graduation, our hearts leapt. And then my worry set in. EOU is five hours from our home. Paul cannot even tolerate going to the doctor. He certainly can't handle sleeping in unfamiliar places. How were we going to this ceremony? Would I have to go alone? We talked about all of this as a family.
It was Paul who made the final decision. He said, simply, "I am going."
So we hatched a plan. We would all sleep in the same hotel room so Paul was safe and always had someone with him. If he woke up scared at night, he might soon recognize three familiar faces. We brought extra medications to help calm him. We made sure he ate, and drank water, and stayed warm.
And, what a challenging day it was. The graduation was outdoors. The weather predictions kept changing. In the end, we ended up getting rained on and then sunburned. That is Oregon for ya! Regardless, we got to celebrate Taylor and all his hard work and see one of our children graduate from college.
Paul knew how important this was and together we made it work. Taylor does not say much. He is a quiet and peaceful guy. He rarely expresses much emotion. But I know - just like I know my own name - Taylor was so happy Paul was there with him.
Thank you Lord for these moments of blessing!
Sunday, June 26, 2016
No More Peas this Season...
Any time Paul has a new interest I try to invest in it as much as financially possible. I also try to stay out of his way as much as possible. I figure the more he has to rely on himself, the more he will use the different areas of his brain. This improves plasticity in most. In those with Alzheimer's the impact is questionable - but I figure why not give it a try!
Paul has always loved gardening. He used to find rare flowers and plants interesting. For many years when the kids were little, we grew most of our own vegetables and even froze or canned lots of food. I think he missed this a lot when we moved to Central Oregon. The harsh climate - hot summers and cold, long winters - made it hard to grow most flowers and vegetables without a green house.
So, when I found a rental home back in Salem with a garden area, I suggested he give gardening another try. He got a bit excited. He wanted to start plants from seeds. He did not really get that it was April when we moved. You really can't plant seeds in April around here.
Money is tight so we could not just afford to let him plant whatever he wanted whenever he wanted. We bought inexpensive seed packets and I found a fairly inexpensive seed warmer. Did you know they even make such things? It is a warm bed - for seeds. An electric blanket on which you can sit your little seed containers. He treated his little seed containers like babies. He talked to them every day and they grew. Alzheimer's did not take away his green thumb. They grew fast and soon they were ready to go outside. At some point in early May, the weather began cooperating and Paul decided to plant his garden.
This is when the funny starts.
Remember I said I try to stay out of his way...
I did not help him plant or watch him plant. I just glanced out the window every once in awhile to make sure he was still in the yard. My bad.
Here is are pictures of the garden currently:
We got about 20 pea pods from that poor little pea plant in the lower left hand corner of that bed in the left picture before the monster squash plant took over. Then the corn popped up tall. That poor pea plant can't get any more sun or any more nutrients!
In the right picture, you see that he must have planted the tomatoes right next to each other. I am not sure how they are getting enough nutrients packed so close together. I think he took every single little plant he grew from seed and packed all of them into two 4' x 6' planters. Poor little plants. I don't think we are getting any more peas this year!
Paul has always loved gardening. He used to find rare flowers and plants interesting. For many years when the kids were little, we grew most of our own vegetables and even froze or canned lots of food. I think he missed this a lot when we moved to Central Oregon. The harsh climate - hot summers and cold, long winters - made it hard to grow most flowers and vegetables without a green house.
So, when I found a rental home back in Salem with a garden area, I suggested he give gardening another try. He got a bit excited. He wanted to start plants from seeds. He did not really get that it was April when we moved. You really can't plant seeds in April around here.
Money is tight so we could not just afford to let him plant whatever he wanted whenever he wanted. We bought inexpensive seed packets and I found a fairly inexpensive seed warmer. Did you know they even make such things? It is a warm bed - for seeds. An electric blanket on which you can sit your little seed containers. He treated his little seed containers like babies. He talked to them every day and they grew. Alzheimer's did not take away his green thumb. They grew fast and soon they were ready to go outside. At some point in early May, the weather began cooperating and Paul decided to plant his garden.
This is when the funny starts.
Remember I said I try to stay out of his way...
I did not help him plant or watch him plant. I just glanced out the window every once in awhile to make sure he was still in the yard. My bad.
Here is are pictures of the garden currently:
We got about 20 pea pods from that poor little pea plant in the lower left hand corner of that bed in the left picture before the monster squash plant took over. Then the corn popped up tall. That poor pea plant can't get any more sun or any more nutrients!
In the right picture, you see that he must have planted the tomatoes right next to each other. I am not sure how they are getting enough nutrients packed so close together. I think he took every single little plant he grew from seed and packed all of them into two 4' x 6' planters. Poor little plants. I don't think we are getting any more peas this year!
Saturday, June 25, 2016
Waking Up Scared
Ever had a nightmare that left physical feelings of distress? I once had such a realistic dream about Paul being unfaithful that I spent a full day being angry toward him and sad even though I knew it was not true. Counselors consider these somatic experiences. Our bodies feel the impacts of our experiences - even our dreams - and carry those experiences. This somatic experiencing can exist even when we ignore the cognitive and emotional impacts of our experiences. As people say, the body keeps score.
So imagine waking up every day experiencing fear. Most of us can manage fear - to one degree or another - when we know what it is we fear. For example, I fear being trapped in small spaces. I have walked away from more than one closed MRI machine despite my medical need for the testing. I learned to manage that fear or have taken medication to get me through the testing. I found a way to deal because I knew why I had the fear and knew the reason for my fear would be time-limited. I also knew I needed the testing. I found a solution. I took medication. And, whereas the fear still existed and I had somatic responses, the long-term impact was minimal.
What if you did not know the cause of your fear? What if - every day - you woke up frightened and could not explain why? What if the fear took hours to go away? What if the fear paralyzed you - kept you from focusing on anything else?
If you know this type of fear - I am sorry. I watch Paul go through this type of fear every day. It is one of the most exhausting symptoms of his Alzheimer's. Why? Here is what happens to the brain one one is fearful:
Fear starts in the amygdala even before we know we are afraid. This fear center attends to potential threat and sends excitatory signals to other parts of the brain. It's job is to keep the brain at full alert.
Then the sympathetic nervous system (SNS) kicks in and releases adrenaline. This occurs so that if there is a real threat, the body is prepared to run or fight. Some people freeze or faint. All of these are protective mechanisms. The body is really amazing. When adrenaline is coursing through our veins, our pupils dilate (bringing in more light so we can see the threat) and blood flow goes where we need it most. Even digestion stops - because, you know - who needs to digest anything when a serial killer is chasing you! Here is my least favorite result of adrenaline - cortisol. Cortisol is a stress hormone. It gets released into the bloodstream and increases glucose levels, which increases energy (remember fight or flight). The body is amazing - especially when there is a real threat.
But, what happens to the body when there is a prolonged exposure to all of these chemicals from constant fear when there is not threat? What happens to the body when these chemicals are just floating around most of the time? Adrenaline and cortisol exposure over time weakens the body's immune system. When the immune system is weakened, people become more susceptible to illness, infection, and injury. These chemicals increase blood pressure and put the heart at risk. Exposure to cortisol can cause weight gain. As the chemical dissipate over time, exhaustion sets in and recovery time - the time to feel "normal" again takes longer and longer.
Sounds torturous doesn't it? I am blaming my 40 pound weight gain over the past five years on cortisol. Bad cortisol - how dare!
Seriously though. Paul woke up again today in complete panic. Since we moved in April of this year, this has been his constant battle. I am certain waking up in a new home after nearly five years in a different home is what set this off. Nothing we've tried has calmed this yet. And, now I am wondering if this is Paul's new baseline. Is fear his newest nemesis?
Paul had one of his twice-yearly neurological visits last month. When I mentioned Paul has been sleeping an average of 16 hours per day since the move, she explained how these chemicals actually cause injury to the brain and body over time. She likened the impact on his brain to that of a person battling a non-stop flu or infection. She said the brain needs time to recover from daily injury. In this case, the daily injury and the treatment for the injury are darn near one in the same - sleep (rest).
Going to sleep causes him to lose track of where he is or what he knew yesterday or whatever. He wakes up panicked. Those stress chemicals float around in him keeping him agitated. They exhaust him. He goes to sleep. It starts all over again.
Can you even begin to imagine what this must be like as a lived experience. I watch it every day and still do not know how he manages it. My husband is weakened by this disease. And, yet I still think he is amazing!
Friday, June 24, 2016
1 Year, 3 Months
I cannot believe it has been one year and three months since my last post. And, I can totally believe it has been one year and three months since my last post.
Where to start? Well, we moved. No one with any form of dementia likes to move. Lots of people do not like to move, but few feel like moving is like starting from scratch with no history and no familiarity. That is what it was like for Paul.
We had to do it. We had lived in Central Oregon for almost 5 years. During that time I gained 40 pounds, stopped exercising, left my full-time job to try to care for Paul full time, and slept maybe 4 hours per night. I was losing my mind. One of us needed to have a clear head. I needed help.
I called Paul's case worker at Aging and People with Disabilities for a list of available caregivers or caregiver agencies in our area. I wanted someone who could come in for a few hours every day to help with cleaning and cooking. I wanted someone I could grow to trust so I could leave for a few hours a couple times a week to go for a hike or run errands. Most importantly, I wanted people Paul could accept. As an introvert, he always had some level of discomfort around others. As the disease progresses, his discomfort increases.
A lovely middle-aged woman came out to take lots of detailed information from me about Paul's needs, personality, and style. We decided he needed two types of caregivers: a gentle, soft-spoken, kind female who would cook and clean; and, a larger, quiet male who could attend to Paul during my absences in case Paul fell or needed physical assistance. At 6'4" and 280 pounds, no small woman would be able to pick him up.
She said she has just the right couple of folks in mind - folks who loved dogs, did not smoke (highest priority), and could focus on their tasks rather than on shooting the breeze. I was excited. I looked forward to catching my breath now and again. I scheduled some help. And, then the guilt set in. What type of person am I to farm out his care to someone else? What if something bad happens? What if he hurts someone because he is confused and combative? What if someone hurts him or steals his medicine or does not feed him? I worried about the worry? I felt guilty about stereotyping caregivers. I committed to keeping an open mind.
Wait. There was still another step. I had to fill out forms. ALL THE FORMS. I had to prioritize tasks for them. I had to identify how much time should be spent on each task. I had to describe Paul's moods and when they were most likely to occur. I had to fill out all the emergency contact forms. Oh, all the forms. I figured I was about 40 hours into caregiving forms by this point.
Then the first day came. And it was a good test because Paul had a minor emergency. Some of his medications are scheduled, meaning we have to have hard copies of the prescriptions in order to get them filled. The problem with scheduled medications is you cannot order them until the patient is nearly out. Insurance companies are so strict about scheduled medications they actually estimate the number of days it should take to get the prescription in the mail and refuse to allow re-fills if the days are off at all. On this first caregiver day, I was expecting the hard copy prescription to come in the mail and it did not. This is a major problem. Although a few of Paul's seven different medications may not impact him much if missed, pain medication (scheduled) is fundamental to his functioning. Those with Alzheimer's do not manage pain or physical discomfort well. He was out of his medication. A phone call to his doctor confirmed they forget to mail the script. I had to drive 40 miles to go pick it up, drive back to our town, and have it filled. I had to be gone for about three hours. Big problem.
I did what I had to do. I met the caregiver - who I suspected smoked, provided him with the instruction booklet I completed, and introduced him to Paul before I left. I was gone for just under three hours.
After the caregiver left, Paul said he was never going to have another caregiver again. NEVER. He said the guy smoked like a chimney. Indeed I confirmed all the cigarette butts on the ground in the back yard. Paul said the dogs hated him (likely because of the cigarette smoke). Paul said he just tried to sit and watch his television show and the caregiver just sat with him and talked, and talked, and talked. Paul was exhausted. So much for choosing caregivers with specific qualities. I have learned since that most agencies just send the closest match from whomever is available.
But here is what the result is from the patient end. That night, Paul begged me to let him take his own life. He begged for a gun. He begged me to give him all his medications. When I refused, he said he would find a way. At about 2 am he told me he could find some tool to cut himself and bleed out. At about 3:30a he told me he would just walk out into the forest and get lost (it was winter - 5' of snow on the ground). It took him awhile between ideas, but I was impressed with how hard his brain was working to come up with new plans. Who thinks this way? Who finds the brain so determined and fascinating in the the midst of crisis? Me, I guess.
I laid in the bed with him with both my arms wrapped around one of his so I could feel his movement in case I fell asleep. I managed to stay awake until he finally fell asleep around 5a. That was the most frightening night I've had with Paul.
After he finally fell asleep I got up and quietly closed the door to our bedroom. I sat where I could see the door and pondered. I could not do this by myself anymore and I was not willing to torture my husband with these random caregivers. I had no choice. We had to move back home and we had to do it now. Right now. I decided. That was it. I needed my kids and my mom and my friends. I needed not to drive an hour every time I needed medication for him. I needed a gym. I needed NOT to shovel my way through five feet of snow to get to the car. I needed SLEEP!
So we moved. Just up and moved. Our home in Central Oregon is still for sale. We are renting a place Salem now. We are 15 miles from our daughter, son-in-law, and youngest son. We are 30 miles from my mother. We are 20 miles from my best friend. And now I am too emotionally drained just remembering all this to continue this blog. I will adjust my attitude and write more later.
Where to start? Well, we moved. No one with any form of dementia likes to move. Lots of people do not like to move, but few feel like moving is like starting from scratch with no history and no familiarity. That is what it was like for Paul.
We had to do it. We had lived in Central Oregon for almost 5 years. During that time I gained 40 pounds, stopped exercising, left my full-time job to try to care for Paul full time, and slept maybe 4 hours per night. I was losing my mind. One of us needed to have a clear head. I needed help.
I called Paul's case worker at Aging and People with Disabilities for a list of available caregivers or caregiver agencies in our area. I wanted someone who could come in for a few hours every day to help with cleaning and cooking. I wanted someone I could grow to trust so I could leave for a few hours a couple times a week to go for a hike or run errands. Most importantly, I wanted people Paul could accept. As an introvert, he always had some level of discomfort around others. As the disease progresses, his discomfort increases.
A lovely middle-aged woman came out to take lots of detailed information from me about Paul's needs, personality, and style. We decided he needed two types of caregivers: a gentle, soft-spoken, kind female who would cook and clean; and, a larger, quiet male who could attend to Paul during my absences in case Paul fell or needed physical assistance. At 6'4" and 280 pounds, no small woman would be able to pick him up.
She said she has just the right couple of folks in mind - folks who loved dogs, did not smoke (highest priority), and could focus on their tasks rather than on shooting the breeze. I was excited. I looked forward to catching my breath now and again. I scheduled some help. And, then the guilt set in. What type of person am I to farm out his care to someone else? What if something bad happens? What if he hurts someone because he is confused and combative? What if someone hurts him or steals his medicine or does not feed him? I worried about the worry? I felt guilty about stereotyping caregivers. I committed to keeping an open mind.
Wait. There was still another step. I had to fill out forms. ALL THE FORMS. I had to prioritize tasks for them. I had to identify how much time should be spent on each task. I had to describe Paul's moods and when they were most likely to occur. I had to fill out all the emergency contact forms. Oh, all the forms. I figured I was about 40 hours into caregiving forms by this point.
Then the first day came. And it was a good test because Paul had a minor emergency. Some of his medications are scheduled, meaning we have to have hard copies of the prescriptions in order to get them filled. The problem with scheduled medications is you cannot order them until the patient is nearly out. Insurance companies are so strict about scheduled medications they actually estimate the number of days it should take to get the prescription in the mail and refuse to allow re-fills if the days are off at all. On this first caregiver day, I was expecting the hard copy prescription to come in the mail and it did not. This is a major problem. Although a few of Paul's seven different medications may not impact him much if missed, pain medication (scheduled) is fundamental to his functioning. Those with Alzheimer's do not manage pain or physical discomfort well. He was out of his medication. A phone call to his doctor confirmed they forget to mail the script. I had to drive 40 miles to go pick it up, drive back to our town, and have it filled. I had to be gone for about three hours. Big problem.
I did what I had to do. I met the caregiver - who I suspected smoked, provided him with the instruction booklet I completed, and introduced him to Paul before I left. I was gone for just under three hours.
After the caregiver left, Paul said he was never going to have another caregiver again. NEVER. He said the guy smoked like a chimney. Indeed I confirmed all the cigarette butts on the ground in the back yard. Paul said the dogs hated him (likely because of the cigarette smoke). Paul said he just tried to sit and watch his television show and the caregiver just sat with him and talked, and talked, and talked. Paul was exhausted. So much for choosing caregivers with specific qualities. I have learned since that most agencies just send the closest match from whomever is available.
But here is what the result is from the patient end. That night, Paul begged me to let him take his own life. He begged for a gun. He begged me to give him all his medications. When I refused, he said he would find a way. At about 2 am he told me he could find some tool to cut himself and bleed out. At about 3:30a he told me he would just walk out into the forest and get lost (it was winter - 5' of snow on the ground). It took him awhile between ideas, but I was impressed with how hard his brain was working to come up with new plans. Who thinks this way? Who finds the brain so determined and fascinating in the the midst of crisis? Me, I guess.
I laid in the bed with him with both my arms wrapped around one of his so I could feel his movement in case I fell asleep. I managed to stay awake until he finally fell asleep around 5a. That was the most frightening night I've had with Paul.
After he finally fell asleep I got up and quietly closed the door to our bedroom. I sat where I could see the door and pondered. I could not do this by myself anymore and I was not willing to torture my husband with these random caregivers. I had no choice. We had to move back home and we had to do it now. Right now. I decided. That was it. I needed my kids and my mom and my friends. I needed not to drive an hour every time I needed medication for him. I needed a gym. I needed NOT to shovel my way through five feet of snow to get to the car. I needed SLEEP!
So we moved. Just up and moved. Our home in Central Oregon is still for sale. We are renting a place Salem now. We are 15 miles from our daughter, son-in-law, and youngest son. We are 30 miles from my mother. We are 20 miles from my best friend. And now I am too emotionally drained just remembering all this to continue this blog. I will adjust my attitude and write more later.
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