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!
Sunday, March 22, 2015
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.
.jpg)
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.
%2Bcopy.jpg)
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.
Subscribe to:
Posts (Atom)