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.
Friday, June 24, 2016
Sunday, March 22, 2015
Is Derek Shepherd really Dr. Jeffrey Kaye?
One of the ways Paul and I learned to keep his mind active is to watch television series on Netflix. Funny as that might sound, series require Paul to keep up with story lines. Whereas he previously might have been bored with "Chic Flix" series, he has learned these types of shows are easier for him to follow. He likes dramas and comedies and does better with hour-long series than 1/2 hour sitcoms.
We also learned quickly to attend to the number of seasons available. He finds it discomforting if a series ends in a few seasons because he gets invested and feels unsettled when the show suddenly ends. He also prefers shows with many seasons because the longer he can watch the more likely he is to remember each character. Further, he hates looking for shows and trying new shows because they cause confusion. We get lots of suggestions.
Since his diagnosis, we have watched Bones, Castle, Dexter, Glades, House of Cards, and, just to throw you off pattern, Trailer Park Boys. When Edward Hermann died recently, we devoted months to re-watching all the Gilmore Girls seasons and I was surprised both by what he could remember and what he did not. We watched that series as our daughter was going through high school as an evening, dinner prep kind of activity. He has some wonderful memories of Shelby, but did not recall the show's plot or story lines well.
After some fits and starts recently, he settled in on Grey's Anatomy, which I am also enjoying. In Season 7, the brilliant neurologist from Seattle Grace Mercy Hospital, Dr. Derek Shepherd, begins a clinical trial for a new Alzheimer's protocol. Watching Paul watch these episodes is hard. He talks to the characters a lot. He expresses his own hopelessness with comments about how they cannot stop this disease and certainly cannot reverse the effects.
As I observe and enjoy the show as well - seeing the passion this character has for those with AD, it suddently dawned on me that Paul's doctor might be the actual Dr. Derek Shepherd. Dr. Jeffrey Kaye is leading neurologist and AD researcher at Oregon Health Sciences University. He has been instrumental in Paul's diagnosis and treatment. He would likely deny any similarity between himself and this fictional neurosurgeon, but Paul and I see his passion and advocacy for those with dementia-related illness and were excited to know a (if not the) real life Derek Shepherd!
We also learned quickly to attend to the number of seasons available. He finds it discomforting if a series ends in a few seasons because he gets invested and feels unsettled when the show suddenly ends. He also prefers shows with many seasons because the longer he can watch the more likely he is to remember each character. Further, he hates looking for shows and trying new shows because they cause confusion. We get lots of suggestions.
Since his diagnosis, we have watched Bones, Castle, Dexter, Glades, House of Cards, and, just to throw you off pattern, Trailer Park Boys. When Edward Hermann died recently, we devoted months to re-watching all the Gilmore Girls seasons and I was surprised both by what he could remember and what he did not. We watched that series as our daughter was going through high school as an evening, dinner prep kind of activity. He has some wonderful memories of Shelby, but did not recall the show's plot or story lines well.
After some fits and starts recently, he settled in on Grey's Anatomy, which I am also enjoying. In Season 7, the brilliant neurologist from Seattle Grace Mercy Hospital, Dr. Derek Shepherd, begins a clinical trial for a new Alzheimer's protocol. Watching Paul watch these episodes is hard. He talks to the characters a lot. He expresses his own hopelessness with comments about how they cannot stop this disease and certainly cannot reverse the effects.
As I observe and enjoy the show as well - seeing the passion this character has for those with AD, it suddently dawned on me that Paul's doctor might be the actual Dr. Derek Shepherd. Dr. Jeffrey Kaye is leading neurologist and AD researcher at Oregon Health Sciences University. He has been instrumental in Paul's diagnosis and treatment. He would likely deny any similarity between himself and this fictional neurosurgeon, but Paul and I see his passion and advocacy for those with dementia-related illness and were excited to know a (if not the) real life Derek Shepherd!
Saturday, March 14, 2015
Natural Consequences
In my role as a clinical supervisor I often remind mental health professionals natural consequences are good teachers. As professional carers, we have a tendency to want to make everything "okay" - to fix problems people create by their poor behaviors. Rather, natural consequences and sitting with the emotional and very real difficulties created is often what teaches people how to avoid making mistakes in the future. Some natural consequences are difficult to predict, however. As a family, we experienced some very difficult natural consequences last week.
As I wrote about in the prior blog, Paul found keys to one of our vehicles and had an accident while trying to drive. Thankfully, he suffered only minor injuries and just needed to rest, take some pain medicine, and sleep. My mother and my children often tell me I need to share more information with them. I tend to just manage things on my own. This time, especially before publishing the blog post, I called each family member to tell them about Paul's accident. Little did I know what would happen next.
Our youngest son, Wyatt, is so much like Paul. They love cars, motorcycles, tools, and all things greasy and dirty. Wyatt debated for months after graduating high school last year about going to school at Wyotech in Laramie, WY. He wanted to become a diesel mechanic, but was concerned about leaving his Dad. This is not the first time Wyatt experienced this decision. We lived in Salem, OR when Paul was diagnosed. All of our children went to West Salem High School there. Wyatt was in high school when we received the diagnosis. We owned a vacation cabin in La Pine, OR and we noticed when Paul was there, he did much better. We assumed it was the difference in weather. People with AD get "Sundowners." When it is dark or cloudy they tend to get sleepy. Indeed, we had to be vigilant to ensure Paul did not reverse sleep cycles during the really bad Willamette Valley winters because it can be so dark and cloudy in the middle of the day. I made a difficult choice when Wyatt was a junior in high school. I decided I would do whatever it took to help Paul maintain as much alertness and awareness as possible. I moved us to La Pine full time. Together, we decided Wyatt would stay in Salem, eventually live with his sister and brother-in-law, and finish school with his friends. He couldn't stand to be away from his dad and eventually came to spend the summer and part of his senior year in La Pine before returning to Salem to graduate. But it was hard for him to make this transition. He just wanted to be with his dad.
Well, when Wyatt found out about the car accident, he quit his Wyotech program on the spot. Many of you might think of this as quitting. In a world in which parents sacrifice their home mortgages, retirement savings, and work themselves to death to pay for their children's educations, it may seem odd for me to say I am proud of Wyatt. Whereas I want him to have the successful career of his choice, I know he values the limited time with his father moreso than receiving his education at one specific school. I did not ask him to quit. Indeed, I wish this was not a quandry any of our children have, but I am proud to have raised children who understand the value of time and relationship with their father. In their own ways, each of them find ways to take that special time with him. I am really proud of my children.
So in addition to the natural consequence of Wyatt leaving his program, we faced the natural consequence of figuring out how to get him home from Wyoming. The vehicle that got him there, a 1994 Ford Bronco, was not going to get him home. He needed us to come get him. Good thing Paul was on pain medication because we embarked on a four state driving journey of brown nothingness. 16 hours of driving is difficult enough when you have two drivers and when you can handle adventure and change. Not so much when you are the only driver, and your partner does not really know where he is when he wakes up. We made it to Wyoming pretty quickly, within 1-1/2 days in fact. But Laramie was a bit of a challenge for all of us. We thought we would rent a truck and trailer his vehicle home but there were not trucks and trailers in a 500 mile radius of that town. Trying to figure out how to get his stuff and his truck and him home became a comedy of errors, which as you can imagine, does not go over well with an AD sufferer. While facing barrier after barrier, we had to keep calm and positive. Even then Paul became so distressed he had to spend one whole day in the hotel room sleeping.
We finally gave up our efforts to keep that darned Bronco and decided to buy a new truck. Enter White's University Motors in Laramie Wyoming (whitesuniversitymotors.com). Brian, our salesman, and Cody, the finance manager, did everything they could to get us into the used truck of our choice within our budget and in the timeline we needed to get back to Oregon - and I mean everything! They gave us a fair trade-in price for Wyatt's Bronco. They agreed to accept my word for my income as I could not access any of my paystubs from Wyoming. And, although we came to an agreement on the price of the truck, when it did not end up fitting Wyatt's payment ability, they lowered the price of the truck by $7,000 and took the hit so they could get us home. They did this without us even knowing about it or us asking for a lower price. Who does this? A couple nice men who understood why we needed to get Paul and Wyatt home. There really are wonderful people in the world.
Despite all the difficulties that come with caring for someone with Alzheimer's I am still floored by the kindness of people who want to help and do help when they can. This includes my clinical staff at Deschutes County Behavioral Health who just stepped up so I could be gone for a week to take care of all these natural consequences. Even within the distress of the moment, day, or week, it is important for caregivers to see the good - to focus on the good in the world. Here was the good from our week:
1. Paul was not hurt worse.
2. Wyatt loves his Dad and wants to be with him.
3. My mother, daughter, and oldest son checked in on us constantly, worried about our progress and safety.
4. Brian and Cody and White's University Motors in Laramie.
5. The truck we bought drove beautifully all the way home.
6. We got there and back safely without too many issues for Paul.
7. The dogs were really happy to see us when we got home.
8. My staff was supportive and provided supervision for our interns at work.
It's been a whirlwind of a week, but 9. the weeks is over today!
As I wrote about in the prior blog, Paul found keys to one of our vehicles and had an accident while trying to drive. Thankfully, he suffered only minor injuries and just needed to rest, take some pain medicine, and sleep. My mother and my children often tell me I need to share more information with them. I tend to just manage things on my own. This time, especially before publishing the blog post, I called each family member to tell them about Paul's accident. Little did I know what would happen next.
Our youngest son, Wyatt, is so much like Paul. They love cars, motorcycles, tools, and all things greasy and dirty. Wyatt debated for months after graduating high school last year about going to school at Wyotech in Laramie, WY. He wanted to become a diesel mechanic, but was concerned about leaving his Dad. This is not the first time Wyatt experienced this decision. We lived in Salem, OR when Paul was diagnosed. All of our children went to West Salem High School there. Wyatt was in high school when we received the diagnosis. We owned a vacation cabin in La Pine, OR and we noticed when Paul was there, he did much better. We assumed it was the difference in weather. People with AD get "Sundowners." When it is dark or cloudy they tend to get sleepy. Indeed, we had to be vigilant to ensure Paul did not reverse sleep cycles during the really bad Willamette Valley winters because it can be so dark and cloudy in the middle of the day. I made a difficult choice when Wyatt was a junior in high school. I decided I would do whatever it took to help Paul maintain as much alertness and awareness as possible. I moved us to La Pine full time. Together, we decided Wyatt would stay in Salem, eventually live with his sister and brother-in-law, and finish school with his friends. He couldn't stand to be away from his dad and eventually came to spend the summer and part of his senior year in La Pine before returning to Salem to graduate. But it was hard for him to make this transition. He just wanted to be with his dad.
Well, when Wyatt found out about the car accident, he quit his Wyotech program on the spot. Many of you might think of this as quitting. In a world in which parents sacrifice their home mortgages, retirement savings, and work themselves to death to pay for their children's educations, it may seem odd for me to say I am proud of Wyatt. Whereas I want him to have the successful career of his choice, I know he values the limited time with his father moreso than receiving his education at one specific school. I did not ask him to quit. Indeed, I wish this was not a quandry any of our children have, but I am proud to have raised children who understand the value of time and relationship with their father. In their own ways, each of them find ways to take that special time with him. I am really proud of my children.
So in addition to the natural consequence of Wyatt leaving his program, we faced the natural consequence of figuring out how to get him home from Wyoming. The vehicle that got him there, a 1994 Ford Bronco, was not going to get him home. He needed us to come get him. Good thing Paul was on pain medication because we embarked on a four state driving journey of brown nothingness. 16 hours of driving is difficult enough when you have two drivers and when you can handle adventure and change. Not so much when you are the only driver, and your partner does not really know where he is when he wakes up. We made it to Wyoming pretty quickly, within 1-1/2 days in fact. But Laramie was a bit of a challenge for all of us. We thought we would rent a truck and trailer his vehicle home but there were not trucks and trailers in a 500 mile radius of that town. Trying to figure out how to get his stuff and his truck and him home became a comedy of errors, which as you can imagine, does not go over well with an AD sufferer. While facing barrier after barrier, we had to keep calm and positive. Even then Paul became so distressed he had to spend one whole day in the hotel room sleeping.
We finally gave up our efforts to keep that darned Bronco and decided to buy a new truck. Enter White's University Motors in Laramie Wyoming (whitesuniversitymotors.com). Brian, our salesman, and Cody, the finance manager, did everything they could to get us into the used truck of our choice within our budget and in the timeline we needed to get back to Oregon - and I mean everything! They gave us a fair trade-in price for Wyatt's Bronco. They agreed to accept my word for my income as I could not access any of my paystubs from Wyoming. And, although we came to an agreement on the price of the truck, when it did not end up fitting Wyatt's payment ability, they lowered the price of the truck by $7,000 and took the hit so they could get us home. They did this without us even knowing about it or us asking for a lower price. Who does this? A couple nice men who understood why we needed to get Paul and Wyatt home. There really are wonderful people in the world.
Despite all the difficulties that come with caring for someone with Alzheimer's I am still floored by the kindness of people who want to help and do help when they can. This includes my clinical staff at Deschutes County Behavioral Health who just stepped up so I could be gone for a week to take care of all these natural consequences. Even within the distress of the moment, day, or week, it is important for caregivers to see the good - to focus on the good in the world. Here was the good from our week:
1. Paul was not hurt worse.
2. Wyatt loves his Dad and wants to be with him.
3. My mother, daughter, and oldest son checked in on us constantly, worried about our progress and safety.
4. Brian and Cody and White's University Motors in Laramie.
5. The truck we bought drove beautifully all the way home.
6. We got there and back safely without too many issues for Paul.
7. The dogs were really happy to see us when we got home.
8. My staff was supportive and provided supervision for our interns at work.
It's been a whirlwind of a week, but 9. the weeks is over today!
Monday, March 9, 2015
Double Insurance Coverage and I Still Pay Cash!
In January, because of Paul's diagnosis, his Medicare kicked in. I thought that would offer some relief for the cost of his medicine. Boy, was I wrong! Paul is on 9 medicines, most are directly related to the symptoms of his AD. One is for a different, minor medical issues. And, he takes Morphine for pain associated with a crumbling neck fusion he had nearly 20 years ago. Not only has he never abused his Morphine, but because I manage his medicines, I make sure he takes half the dosage than is prescribed.
Morphine is a controlled substance. It requires a hard copy script from the doctor. I drove into Bend today to our local Walgreen's where my employer, Deschutes County Behavior Health, has a contract and they reminded me I need a hard copy. There was a 40 minute drive down the drain and is an example of issue one for caregivers. We get tired too! We forget too! I made the trip useful and ran some other errands, planning to return home to Paul. Our oldest was home with him while I was gone.
As I work closely with his physician (because of my job), I stopped into the medical clinic to get the hard copy and decided to use the local pharmacy even though the prescription might cost more. The doctor's medical assistant was busy (she is a hard-working gal) so I decided to run some more errands in town and called to let my son know why it was taking so long. No one answered the phone. I assumed Paul was sleeping and Zach was in his room.
After 40 minutes, when I returned to the clinic, they gave me the hard copy so I brought it right next door to the local pharmacy. I gave them our insurance card and asked them to make copies of the Medicare card so that both insurances could be billed. I sat an waited for them to fill the prescription. After about 10 minutes, a young woman approached to tell me the Oregon Health Plan (medicare administrator in Oregon) was having problems with their electronic health system. The pharmacy could not access approval or coverage because OHP's system was "down."
So, I indicated I would pay for the co-pay and suggested they just bill my county insurance as normal. I waited another 15 minutes.
The same lovely lady approached me to tell me my insurance (NWPS) would not approve the prescribed medication because they wanted Paul to sign a pain contract. I explained Paul could not sign - nor understand - the contract because he has Alzheimer's - but they indicated they could not fill the prescription without the company's authorization. So, I called NWPS. The nice lady on the phone told me is was Deschutes County's policy to require a pain contract for anyone on a pain medicine. I explained why the pain contract was meaningless in this case. I further explained that as they can see when we fill his Morphine prescriptions, they can tell he does not abuse his medication. Indeed, they can tell we fill them nearly one month later than we are able. She told me they still needed the doctor to confirm it was "okay to give him the pain medication." I asked her what it means to her that the doctor was the one the signed the prescription in the first place. She restated she was just following policies.
I am pleased I remained calm - especially as I was sitting in a small, local pharmacy. I asked her to think like a human being. I told her the last time this particular medication was delayed, Paul ended up on a two-physician hold in the psychiatric unit of the local hospital. Indeed, any medication change can affect someone with dementia in horrible ways. They cannot handle change - in environment, behaviors, habits, or pain. I told her this decision would end up with him in the ER and asked if the insurance company would rather pay for that bill. She spoke with her supervisor and they agreed to a one-time refill. Thank you kind human being at NWPS.
So I spoke to the lovely lady at the pharmacy and she re-submitted the prescription. I waited another 15 minutes. Then she appoached my again. I thought I would start to cry. The doctor had prescribed enough pills to cover 37 days rather than 30. The insurance company refused to pay for the additional 7 day supply AND, the Oregon Health Plan site was still down. If I wanted the medication I would have to pay for the co-pay and for the additional 7 days by myself. Fine. FINE. Six hours since I left my husband at home and I just wanted to get back to him. FINE! I payed the bill and got home, thinking I got what I needed for him and everything would be okay.
Then, when I got home, Paul was sitting on the front porch. I could tell he was distressed. What happened? He found the keys to our second car and drove out the front gate of our property. He thought to help in my absence. He thought it was garbage day (it is NOT garbage day). He wanted to bring to garbage out to the gate using the Rodeo. Only, he did not remember to put the car in park when he stopped at the gate. He actually put it in reverse instead. It back over him, knocked him to the ground, and then ran into a tree. He was more concerned about the car than his person. Ever feel like you just cannot take any more distress? I am just at my end today...
Does 6 hours messing with the insurance and medications matter? It sure does. Especially when ANYTHING can happen in that six hours. I could have lost him today. I praise God I did not, and yet I am so mad that it took 6 hours to get his medication today. I could have lost him.
Morphine is a controlled substance. It requires a hard copy script from the doctor. I drove into Bend today to our local Walgreen's where my employer, Deschutes County Behavior Health, has a contract and they reminded me I need a hard copy. There was a 40 minute drive down the drain and is an example of issue one for caregivers. We get tired too! We forget too! I made the trip useful and ran some other errands, planning to return home to Paul. Our oldest was home with him while I was gone.
As I work closely with his physician (because of my job), I stopped into the medical clinic to get the hard copy and decided to use the local pharmacy even though the prescription might cost more. The doctor's medical assistant was busy (she is a hard-working gal) so I decided to run some more errands in town and called to let my son know why it was taking so long. No one answered the phone. I assumed Paul was sleeping and Zach was in his room.
After 40 minutes, when I returned to the clinic, they gave me the hard copy so I brought it right next door to the local pharmacy. I gave them our insurance card and asked them to make copies of the Medicare card so that both insurances could be billed. I sat an waited for them to fill the prescription. After about 10 minutes, a young woman approached to tell me the Oregon Health Plan (medicare administrator in Oregon) was having problems with their electronic health system. The pharmacy could not access approval or coverage because OHP's system was "down."
So, I indicated I would pay for the co-pay and suggested they just bill my county insurance as normal. I waited another 15 minutes.
The same lovely lady approached me to tell me my insurance (NWPS) would not approve the prescribed medication because they wanted Paul to sign a pain contract. I explained Paul could not sign - nor understand - the contract because he has Alzheimer's - but they indicated they could not fill the prescription without the company's authorization. So, I called NWPS. The nice lady on the phone told me is was Deschutes County's policy to require a pain contract for anyone on a pain medicine. I explained why the pain contract was meaningless in this case. I further explained that as they can see when we fill his Morphine prescriptions, they can tell he does not abuse his medication. Indeed, they can tell we fill them nearly one month later than we are able. She told me they still needed the doctor to confirm it was "okay to give him the pain medication." I asked her what it means to her that the doctor was the one the signed the prescription in the first place. She restated she was just following policies.
I am pleased I remained calm - especially as I was sitting in a small, local pharmacy. I asked her to think like a human being. I told her the last time this particular medication was delayed, Paul ended up on a two-physician hold in the psychiatric unit of the local hospital. Indeed, any medication change can affect someone with dementia in horrible ways. They cannot handle change - in environment, behaviors, habits, or pain. I told her this decision would end up with him in the ER and asked if the insurance company would rather pay for that bill. She spoke with her supervisor and they agreed to a one-time refill. Thank you kind human being at NWPS.
So I spoke to the lovely lady at the pharmacy and she re-submitted the prescription. I waited another 15 minutes. Then she appoached my again. I thought I would start to cry. The doctor had prescribed enough pills to cover 37 days rather than 30. The insurance company refused to pay for the additional 7 day supply AND, the Oregon Health Plan site was still down. If I wanted the medication I would have to pay for the co-pay and for the additional 7 days by myself. Fine. FINE. Six hours since I left my husband at home and I just wanted to get back to him. FINE! I payed the bill and got home, thinking I got what I needed for him and everything would be okay.
Then, when I got home, Paul was sitting on the front porch. I could tell he was distressed. What happened? He found the keys to our second car and drove out the front gate of our property. He thought to help in my absence. He thought it was garbage day (it is NOT garbage day). He wanted to bring to garbage out to the gate using the Rodeo. Only, he did not remember to put the car in park when he stopped at the gate. He actually put it in reverse instead. It back over him, knocked him to the ground, and then ran into a tree. He was more concerned about the car than his person. Ever feel like you just cannot take any more distress? I am just at my end today...
Does 6 hours messing with the insurance and medications matter? It sure does. Especially when ANYTHING can happen in that six hours. I could have lost him today. I praise God I did not, and yet I am so mad that it took 6 hours to get his medication today. I could have lost him.
Saturday, March 7, 2015
Preparing to Make Memories
Paul's memories are never more clear than when working in the garage. Put a tool in his hand and he comes alive for just a bit. Put a tool in his hand while hanging out in the garage with our son, Wyatt, or son-in-law, Taylor, and he just might function for half a day before zoning out or falling asleep.
I used to take this personally. Clearly, he would much rather hang out with one of the boys than with me, right? Not really, but there are so many ways of knowing - of experiencing memory. For Paul, touching tools and car parts makes him feel alive.
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This does not mean he is somehow more safe or more functional in the garage? Indeed, a month ago he drilled a sheetrock screw straight through his finger. I know, your partner does that stuff too, right? Does your partner need convincing he is bleeding all over the floor? Does he need help wrapping it up without shoving the darn thing right through his bone? Does he need to be bribed into going to the doctor? Mine does! It took a couple of hours, but what finally worked to convince him to drive into town and have the darn thing removed and treated? McDonald's, yep. Double Quarter Pounder with cheese, fries, and a vanilla shake (supersized, of course).
That same week, because sometimes people with Alzheimer's and other dementias have tremors, Paul tripped over items laying on the floor while dragging his right foot a bit. At 6'4" and 260 pounds, it is a bit difficult to help him get up - especially when his balance is so poor. It does not help that his garage looks like it belongs to an AD patient. His shops never looked like this before the AD.
There has to be a solution that can keep him safely active in the garage, right? Well, as is true for most dementia patients, chaotic environments are much more dangerous. The more distraction the brain experiences, the more likely confusion occurs. The more confusing, the more attention is diverted from the task at hand.
This is where my Pinterest addiction really helps. The joy I found planning the garage organization continues to astound me. In fact, I decided one shop was not enough. We had an extra shed that once held firewood. Whereas firewood is important in an area with winter temperatures that can dip below -10 degrees, I threw it all out. I ordered 5-1/2 yards of concrete, bought lots of R11 and R19 insulation (wall and ceiling, respectively), and 1/4" CDX to cover the walls. I have pegboard, cabinets, and countertops salvaged from every RESTORE (Habitat for Humanity retail stores such as newberryrestore.org) within 100 miles. We have a ways to go, but when done, I hope to provide two shop spaces, divided by type of task (welding, woodwork, kiln, auto maintenance and repair, etc.) so the entire space is calm, organized, and clean.
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Just as Paul still compares his ability to work to when he was 25, my heart yearnlapien s to get the work done. However, the point of designing these spaces is so I (or one of our children) can be with him while he works on projects and ensure his safety. THIS MEANS WORKING AT HIS PACE. I was shouting at myself using all caps as a reminder. He has been able to work productively for about 2 hours every day for the last three days. Despite my desire for speed, I get to see him feel accomplished. He gets to see he can still "make things nice." Today we argued about how to put up the insulation. I got frustrated. I had to let him try it his way until he learned his way would not work. In the end we came up with a unique solution together. And, for a moment it was like having a relationship back in which I am not the only one required or capable of making a decision. It was two hours today I will cherish. Here's what I want people to know: You have to be with them to really BE WITH THEM. There is no replacement for time and effort. I know as his illness progress and his decline continues, there will be less of him with whom I can be present. My heart is with those of you for whom this is true. Meanwhile, I am going to take in every moment I can.
I used to take this personally. Clearly, he would much rather hang out with one of the boys than with me, right? Not really, but there are so many ways of knowing - of experiencing memory. For Paul, touching tools and car parts makes him feel alive.
This does not mean he is somehow more safe or more functional in the garage? Indeed, a month ago he drilled a sheetrock screw straight through his finger. I know, your partner does that stuff too, right? Does your partner need convincing he is bleeding all over the floor? Does he need help wrapping it up without shoving the darn thing right through his bone? Does he need to be bribed into going to the doctor? Mine does! It took a couple of hours, but what finally worked to convince him to drive into town and have the darn thing removed and treated? McDonald's, yep. Double Quarter Pounder with cheese, fries, and a vanilla shake (supersized, of course).That same week, because sometimes people with Alzheimer's and other dementias have tremors, Paul tripped over items laying on the floor while dragging his right foot a bit. At 6'4" and 260 pounds, it is a bit difficult to help him get up - especially when his balance is so poor. It does not help that his garage looks like it belongs to an AD patient. His shops never looked like this before the AD.
There has to be a solution that can keep him safely active in the garage, right? Well, as is true for most dementia patients, chaotic environments are much more dangerous. The more distraction the brain experiences, the more likely confusion occurs. The more confusing, the more attention is diverted from the task at hand.
This is where my Pinterest addiction really helps. The joy I found planning the garage organization continues to astound me. In fact, I decided one shop was not enough. We had an extra shed that once held firewood. Whereas firewood is important in an area with winter temperatures that can dip below -10 degrees, I threw it all out. I ordered 5-1/2 yards of concrete, bought lots of R11 and R19 insulation (wall and ceiling, respectively), and 1/4" CDX to cover the walls. I have pegboard, cabinets, and countertops salvaged from every RESTORE (Habitat for Humanity retail stores such as newberryrestore.org) within 100 miles. We have a ways to go, but when done, I hope to provide two shop spaces, divided by type of task (welding, woodwork, kiln, auto maintenance and repair, etc.) so the entire space is calm, organized, and clean.
Just as Paul still compares his ability to work to when he was 25, my heart yearnlapien s to get the work done. However, the point of designing these spaces is so I (or one of our children) can be with him while he works on projects and ensure his safety. THIS MEANS WORKING AT HIS PACE. I was shouting at myself using all caps as a reminder. He has been able to work productively for about 2 hours every day for the last three days. Despite my desire for speed, I get to see him feel accomplished. He gets to see he can still "make things nice." Today we argued about how to put up the insulation. I got frustrated. I had to let him try it his way until he learned his way would not work. In the end we came up with a unique solution together. And, for a moment it was like having a relationship back in which I am not the only one required or capable of making a decision. It was two hours today I will cherish. Here's what I want people to know: You have to be with them to really BE WITH THEM. There is no replacement for time and effort. I know as his illness progress and his decline continues, there will be less of him with whom I can be present. My heart is with those of you for whom this is true. Meanwhile, I am going to take in every moment I can. Monday, November 4, 2013
Welcome to Art of Dementia and thank you for joining me on the most unique and challenging journey of my life. I have been pondering and praying about the creation of this blog for a couple of months. Every once in awhile I have posted some sweet stories about dementia on my Facebook page - just to get it off my chest or address my wonder publicly. I have been amazed by the responses to those comments. I began to understand that people were learning from what I wrote. They were gaining hope. They developed empathy. They were reminded to be thankful for their health and the health of their loved ones. I am not inspirational, but the stories are. So, thank you in advance for allowing me to share our stories.
My name is Michelle Cox. About 2 years ago, at the age of 48, my husband was diagnosed with Early-Onset Dementia. People often asked how we knew something was wrong. It was Spring 2011 when I first noticed unusual behaviors. Paul grew up in the town in which we were living. He wandered the main streets and back roads of our state's capital city when it was mostly pastoral. He knew how every rural route and city street connected. He often recalled what businesses used to exist when pointing out updated storefronts. Then suddenly, his routes around town became circuitous. One day we passed a street on which we should have turned. I asked, "Why didn't you turn on Market?" He said, "Market doesn't connect with Liberty here." We were driving on Liberty and just passed Market. I pointed this out to him and he began arguing passionately that I was wrong. People who know my husband know he does not argue passionately. He generally doesn't argue at all. Despite the fact his sense of direction was off, it was really the argument that caused me to start observing him more closely.
The more I observed, the more my fears were confirmed. He would get frustrated with one of our children for using his tools and not replacing them. Wyatt, our youngest would deny using the tools. Paul would find them later and only then remember he had misplaced them. We found keys in the refrigerator and the coffee pot in the bathroom. When I came seriously concerned I began asking questions he would normally answer with little hesitation. What is our anniversary? How old am I? What year were we married? Yes, cynical readers - he would normally have known the answer to those questions. But no more.
Here is when the story becomes markedly curious from my perspective... I just happen to have a doctorate in Human Development and Family Studies, with doctoral minors in Counseling and Gerontology. I studied dementia during my doctoral program and even wrote one of my comprehensive exam questions on the topic. What is the likelihood that my young husband might suffer from a disease that I am uniquely able to identify, diagnose, and understand? I knew some simple tests to assess his cognitive functioning and memory abilities. "Honey, can you spell the word world backward?" "Count backward from 100 by 3's." "Can you draw the face of a clock and place all the numbers in the correct locations?" All of his responses suggested either delay in processing or complete inability. This represented a significant change for a man whose work as a plumber required extensive memory of building and plumbing codes, who worked with fractions and measurements consistently, who purchased, remodeled, and flipped house after house. My heart sank.
Thus started a journey we have been on for the last 2-1/2 years. This journey has included panic, joy, love, peace, frustration, sadness, fear, confusion, anger, passion, hopelessness, hopefulness, grace, awe, and mostly, patience. This blog is my way of maintaining a diary of our experiences - the real life of dementia. It is also a tribute to Paul - his courage, his effort, his legacy - and, his art. You will not believe the art! And I will tell you all about it when I write the next post.
Blessings, Michelle
My name is Michelle Cox. About 2 years ago, at the age of 48, my husband was diagnosed with Early-Onset Dementia. People often asked how we knew something was wrong. It was Spring 2011 when I first noticed unusual behaviors. Paul grew up in the town in which we were living. He wandered the main streets and back roads of our state's capital city when it was mostly pastoral. He knew how every rural route and city street connected. He often recalled what businesses used to exist when pointing out updated storefronts. Then suddenly, his routes around town became circuitous. One day we passed a street on which we should have turned. I asked, "Why didn't you turn on Market?" He said, "Market doesn't connect with Liberty here." We were driving on Liberty and just passed Market. I pointed this out to him and he began arguing passionately that I was wrong. People who know my husband know he does not argue passionately. He generally doesn't argue at all. Despite the fact his sense of direction was off, it was really the argument that caused me to start observing him more closely.
The more I observed, the more my fears were confirmed. He would get frustrated with one of our children for using his tools and not replacing them. Wyatt, our youngest would deny using the tools. Paul would find them later and only then remember he had misplaced them. We found keys in the refrigerator and the coffee pot in the bathroom. When I came seriously concerned I began asking questions he would normally answer with little hesitation. What is our anniversary? How old am I? What year were we married? Yes, cynical readers - he would normally have known the answer to those questions. But no more.
Here is when the story becomes markedly curious from my perspective... I just happen to have a doctorate in Human Development and Family Studies, with doctoral minors in Counseling and Gerontology. I studied dementia during my doctoral program and even wrote one of my comprehensive exam questions on the topic. What is the likelihood that my young husband might suffer from a disease that I am uniquely able to identify, diagnose, and understand? I knew some simple tests to assess his cognitive functioning and memory abilities. "Honey, can you spell the word world backward?" "Count backward from 100 by 3's." "Can you draw the face of a clock and place all the numbers in the correct locations?" All of his responses suggested either delay in processing or complete inability. This represented a significant change for a man whose work as a plumber required extensive memory of building and plumbing codes, who worked with fractions and measurements consistently, who purchased, remodeled, and flipped house after house. My heart sank.
Thus started a journey we have been on for the last 2-1/2 years. This journey has included panic, joy, love, peace, frustration, sadness, fear, confusion, anger, passion, hopelessness, hopefulness, grace, awe, and mostly, patience. This blog is my way of maintaining a diary of our experiences - the real life of dementia. It is also a tribute to Paul - his courage, his effort, his legacy - and, his art. You will not believe the art! And I will tell you all about it when I write the next post.
Blessings, Michelle
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