A FEW MORE THINGS
YOU MIGHT ENJOY
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WEEK 405-414
Week Ending April 21, 2009
Weight Watchers Goal
(the top of my normal weight range)
200.0 pounds
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This was one of the darkest stretches of time that I have ever faced. There were several negative things impacting us continually, and they added together to create a nightmare which we are still recovering from, and will be recovering from for a long time to come.
- Mom's Dementia
- Dealing with a contractor who was dishonest in word and deed
- Living in an unfamiliar isolated environment
- Limited opportunity to escape for moments of relaxation
- No hope of any of these things getting better
• Mom's Dementia—No one, who has not seen this condition at work for himself can possibly understand what this means. A viable, often wonderful person is turned into a sad caricature of himself. Traits that were once a minor flaw, held in check and actually sometimes forming an endearing trait, are let loose to crash into the feelings of others, usually loved ones, causing pain and despair.
Memory loss causes problems that could never be predicted by the uninitiated. "What day is it today?" On the 4th, 5th or 7th time the question is asked, you are left to wonder why you should bother to answer. It is not to inform, but only to be polite. But whether you are polite or not is forgotten along with your answer, and the question comes around again. This isn't a bad day, but a normal day.
"What happened to my green folder?" The question is accusatory, as if you personally had hunted down this item, taken it and hidden it, or even used it for your own purposes, maybe with sinister intent. It is asked in all seriousness, and the tone of accusation cannot be missed.
"Where's my checkbook register?" "What happened to my electric bill?" "Where's my diary?"
Never do you hear, the question phrased as, "I have misplaced something, would you help me find it please?" Always, it is first assumed that one of the other members of the household have mysteriously moved, hidden, or even stolen the item.
And in followup, once you have helped locate where the confused person placed his item, not once do you here, "I'm sorry. I obviously forgot where I put it. I am sorry I blamed you for taking it."
This isn't merely a daily exercise. It often can be an hourly routine. Once uninterrupted time to work becomes fragmented disjointed segments. You start a task and all at once hear a call or your space is invaded by a physical intrusion, initiated because the demented one is confused about this or that item, often one you had just cleared up recently for him.
The ability to reason can be viewed as following a path of stepping stones across a brook. Each point along the path of following a line of reasoning could be seen as one of those stones. Let's take driving for an example, since it is one we have personally faced dozens of times.
We felt that Mom was a potentially unsafe driver. However, we didn't feel qualified to make that call entirely on our own. If Mom could be a safe driver, then there was no way we wanted to block her from doing so. On the other hand, if she hurt herself or others while driving, we would have felt responsible if we didn't at least have her checked out.
We started by seeing her personal physician. Her doctor said that Mom posed a potential threat to others on the road and should be evaluated by a specialist before being allowed to drive. The doctor submitted a legal form to the DMV and Mom's license was suspended as a result, until a doctor said she was safe to be tested by DMV. The steps to getting her license back had then become: 1) get a doctor to say she was safe to be tested; 2) take the written and driving tests.
That is where the situation stood. It seems very simple and clear. Mom needed to see a doctor who could authoritatively evaluate her (the personal physician was not a neurologist) and then determine if she could safely be allowed to be tested.
Well, almost daily, we were hit with either a statement or a question about why we had taken Mom's driving away. Every day we tried to explain to her that ultimately, it was the doctor who had officially taken her license and another doctor would have to be seen in order to get it back. It was completely out of our hands at this time. Originally, we had hoped to just take her down to DMV and let them make the call, but once the doctor got involved it became more complicated. However, the process is still very straight forward. The State of Oregon does not want to take an elderly person's license away unless there is just cause.
A reasonable person would look at the facts as presented and proceed to the conclusion that nothing need be discussed except when will the doctor's appointment be where she can be evaluated.
But halfway across the stream of logic, Mom would fall off and we would go into a circle of assertion: "I was never tested." (She was tested, we pointed out, by the doctor.) "She never saw me drive." (She tested your mind, not your driving. That is what is in question.) "She doesn't know anything." (When we did see a neurologist, he too explained to Mom that her condition would make it more likely that she would run over a child or have an accident if an emergency came up on the road, because her mind would not process the emergency information, and create an appropriate response in time.) "He didn't test me." (Yes, he gave you an examination and you scored 21 out of 30, even with a couple of points added in for your age.) "He didn't test my driving." (No, he tested your mind, which indicates how you would react while driving.) "I was never tested." (Sound familiar?)
Round and round we would go. Voices would increase in volume but understanding remained well out of reach.
Another point on driving was reached when I had her convinced, for a moment, that she was a potential hazard on the road, and her reply was, "I will just drive slower." I explained that driving too slow is a major road hazard. Someone could easily run into her rear. "Then it would be his fault."
And repetition, was a new application of the old water torture of dropping water upon a victim's forehead, over and over again, until he went crazy waiting for the next drop of water to fall.
Every time one of Mom's memory lapses caused an issue, she would say, "I just have too many things going on." Some variation of that phase still makes it into every single conversation we have with Mom, even over the phone.
She scrambled up her checkbook before we moved down, and didn't balance it for nearly a year. (And just how shocking that is, should be clear when you think about the fact that she was an accountant in her working days.) The reason she gave was that her year was just too busy, and her mind was "filled with too many things." (She had one thing going on, and that was preparing her house for sale. She was cleaning up the house, and organizing her possessions for that period of time. She had help with what she was doing as well. It was a challenging task, but a very small one when compared with what she had to deal with in earlier years with her invalid, but still domineering husband, while managing their finances, their several properties, and their taxes.)
Any symptom of dementia that Mom displayed, she attempted to cover up with this same excuse. Life was just too complicated at the time of the symptom. It's as if Mom accepts that there was a problem at the instant in question, but it is all explained away as merely mental overload from an out of the ordinary amount of stress.
For some reason these lines come to mind:
I heard the lookout shout down, "There's icebergs around, But still everything's all right" (from Dance Band on the Titanic by Harry Chapin.)
All the indication of trouble are merely illusionary, and "still everything's all right," because I have a reason for what happened, and that is happening. "If I tell you that I was too busy, then that erases anything you might have notice about my conduct."
I can clearly picture in my imagination, Mom telling the policemen, "I would have hit the brake and avoided running over that boy, but there were too many things going on in my mind for me to do it."
I can't begin to list the barbs, the insults, the implied criticisms, the suggestions of mischievousness or even larceny by our supposed moving of her possessions from where she expected to find them, to some other place. And I was on Mom's good side. Poor Dotti was always "she" or "her," never Dotti. Dotti was singled out as the instigator of every ill, even though Dotti and I were on the same page every time one of these points were brought up. The air was filled with bitterness and irrational assertions and there was no place to run.
• Dealing with a contractor who was dishonest in word and deed—We knew, when we moved down to help Mom, that there was not enough room in Mom's house to allow us to both live and to do our work. We knocked around a few ideas, that ranged from moving a temporary trailer onto the property, to building an office. We made up our minds to build, after speaking with the man that Mom suggested, and whom LeRoy had worked for in school. Both of our family members who knew him had a high regard for him. So, we went into the process with our guard all the way down. Oops!
We met with the man in Mom's dining room, and he started right off lying to us. He said that he would be ready to work 6 days a week, sunup until sundown until the building was complete. We had no reason to believe at that point that he wasn't anything other than a hard working man with the highest integrity.
He said he could get the building up in about a month and it would take about $X dollars to pay for the materials. We were talking about having a garage as well as what we actually built at this point. When you added up his estimated labor plus his estimated materials costs, it all was looking to come in at a figure that compared favorably with buying a trailer or any other option we were considering. This was in mid October, and our lease in Vancouver ran out at the end of December. He had his month, and more than another beside. He could have it done by the time we moved the rest of our stuff down from our Vancouver house, so we would have a place to put it. Even if his estimate was off by half, the price and the timing would be doable.
Looking back, I can just say that we were sheep ready for shearing, from the way the contractor viewed things. He never once showed up for 40 hours of work on any given week. He kept disappearing, and later we found that the money we were paying him up front to do the work, he was spending on other people's projects, and then when he needed materials for our project, he would steal from someone else he was working for. He just took $600 of our money to buy himself tools which he justified as "making the project go faster." Except the project never did go faster.
In December, long after the building was supposed to be completed, we moved our stuff down, and found that he had left us hanging once more. The storage side of the building was incomplete and it was damp and uninsulated. Our stuff had to sit in those conditions for weeks before he finally got around to sealing up the space and putting in the insulation.
We found out later that he already had other commitments before he took our job, and he knew he could never keep the commitments he made to us. But he wanted the money so he kept us from getting another contractor by lying to us, when we really needed some honesty.
Months later, with the building still not completed, he confessed all of this to us, and tried to justify it because he had a family to feed. To him it was a charity case not a business deal. Of course, only one party of that arrangement was aware of the ground rules.
Day after day, week after week, month after month, we waited for him to keep his word and finish the building. It still hadn't passed inspection when we moved up to Spokane in April. We finally had to put paint on the walls ourselves, inside and out, even though we had paid the thief (what else can you call him?) to do the work.
The point is, we needed the building to go up, and be completed quickly, as was promised, and instead it was a constant point of stress for us as we tried to motivate the jerk to do his job. It was a significant piece of the nightmare that had become our lives in Tiller. The fact that we had to also pay over twice what he originally estimated added even more stress into the mix.
• Living in an unfamiliar isolated environment—Dotti and I often commented on the fact that we felt like we had moved to "Green Acres" in Tiller. Services were provided by people who were either uncaring or incompetent. When our dish TV was installed the installer just ran a coaxial cable across the top of the rug, right in a walking lane and told us to deal with it by putting a rug across it. We told him that we expected him to run the cable through the wall and install it correctly. He looked at us like we were from Mars. The company sent out a carpet layer to run the cable under the rug, instead of putting it through the wall. I am still shocked at the incompetence that company displayed. But I shouldn't be I suppose, when I think of the rest of the service providers we dealt with.
The one glowing exception was the Hughes Net installer. That guy knew what he was doing and he did efficiently and precisely. It was a stellar example of a complete contrast between his good and the others' bad practices.
We just bought bottled water rather than dealing with the local water. I had to make my coffee in the bathroom upstairs and nothing was ever simple. With Mom complaining about the space we were taking upstairs, we were cramped and uncomfortable the entire time. The combination of not having enough room, with having to listen to complaints about how much room we were taking, made it quite unpleasant.
We had moved down, so Mom could avoid having to change her life too much. She didn't use the upstairs hardly at all, and was able to keep her living room, study, and bedroom entirely to herself. She still lived in the same place, could attend her same church and retain all her old friends. She didn't have to learn a new home, new neighborhood, or anything. This all made perfect sense to us, because we had read that people with dementia find it hard to adjust to new surroundings.
The problem with dementia is that the one with it, doesn't appreciate the problems of others, and he only sees the problems of his own, because perhaps even those are more than he can handle, and there is no room left over to worry about anyone else. Whatever the reason was, we found that we were under constant attack for the changes we did have to make, and never once were we thanked for the sacrifices that we had made in order to try and make things easy for Mom.
The life we had created for ourselves in Vancouver was gone. It was replaced by a rural, unsupported environment, where we didn't fit and were given very little help in making our own adjustments. Each day it grew harder and harder to do our jobs, and more and more clutter of Moms condition took up larger and larger pieces of our time, and to no good end. Problems didn't get solved, and if we tried to solve them Mom fought us every step of the way, demanding that she wanted to do it herself, and then didn't get it done. We were clearly in over our heads!
• Limited opportunity to escape for moments of relaxation—We went weeks before we finally made the move to get some time off from the nightmare. Our dear friend Karen from Fairbanks had warned us that we needed to get some time off. My cousin Fay did the same.
What we found, every time that we tried to get a moment away from Mom, was that Mom would break out the guilt guns. She would complain that we had taken her driving away from her and she didn't like the fact that we were going to spend some time together away from her.
I contacted Mom's pastor, to arrange for someone to come and pick Mom up for church and to drop her off. It made sense, that if Dotti and I were going to have a day off, we should do it on a day when Mom had stuff going on anyway. If Mom went to church, and then stayed around for a church potluck dinner, or went to a friend's house for lunch, she would be spending far less time all alone moping. The pastor agreed and set up some rides for Mom. So, Dotti and I planned our first outing, away on our own—a whole day, all our very own. It was the last day of February, and we had been their since November. We needed a break very badly.
As we were heading for the door, I called out to Mom, who was in her bathroom, that we were going and that I hoped she had a nice day. I was feeling good, and I sincerely hoped that Mom would have a good time at church.
Mom, on the other hand, obviously didn't feel the same way about me. She came out of her bathroom and walked up to us at the door, and I can still clearly see how her face looked as if she were dead, and she were completely devoid of joy. She put everything she had into trying to make us feel terrible about having an escape from her wet blanket. I could see that she was appalled at the idea of Dotti and I having any sort of escape.
To show my state of mind at that time, I am including part of something I wrote the next day in an email to a friend:
Let me start with Dotti. None of this [the move down to Tiller to take care of Mom] could have happened if not for Dotti’s acceptance of the idea. In fact she first brought it up. She has been a real trooper. Mom and her share the quality of being very strong willed, and it creates some very interesting situations when neither of them will back down. When I step in and try to smooth the waters I get my head handed back to me sometimes. So, it all can be quite exhilarating on our “good days.” We had such a day on Friday. Of course it centered around Mom’s driving, or her lost license, which see keeps implying that I maliciously took from her with no reason whatsoever, just to be mean I suppose.
Dotti has a very good heart, and while she is hurt by all of this, she does her level best to work through it. I don’t know how she stands it sometimes. Her own mother didn’t show her love, and now this just sticks a knife in that old wound.
In [George Orwell's] 1984 there was of course Room 101, where Winston Smith faced his rat. I can’t shake the feeling that I am having my face pressed into the unspeakable horror of witnessing the only consistently sane person of my childhood turning into someone else entirely, and it someone I don’t like very much. The one solid bit of comfort and love in my childhood—when my world could be turned on its head at a moment’s notice by my drunken father, and it happened way too often for me to count, and you can pick the week of any year you choose for an example of it—now has trouble trying to draw a clock face, and a cube.
As Dotti and I walked out the door yesterday for our “day off” Mom comes out of the bathroom, looking like she just came out from a funeral chapel where she lost the most treasured person of her life, and tells me that she is a prisoner. She stands there in her church dress, which she has on because she is going to church in a couple of hours. She will be going out with friends of hers to her church, which she has attended for decades, and today she feels imprisoned.
I honestly don’t know how much of her depression was from the fact that Dotti and I were escaping for the day (I think it was about 90% of it to be honest), and how much was that she had to rely on someone else for a ride. She has mentioned in candid moments that she wants to punish us for taking her driving away from her. This is coming out of the mouth of the body which resembles the one once inhabited by the loving and selfless mother I have treasured for so many years.
There are times, when I face up to this change in Mom, during my private moments, I find myself just falling into emotional sobs. Usually I try not to face up to it, so I won’t have to go through that. I have never been one prone to crying over the bitter turns that life can take, but there are times when my resolve wears thin, and I let my guard down for a moment and it all sneaks out.
I left Mom at the door, yesterday, with her looking like death warmed over, but I refused to let her ruin my day, even though she did manage to poison the next half hour or so. The rest of the day was golden and when we got home, Mom was her old self, as if nothing had happened…so like a child, who lives in the moment and then moves on to the next new moment, forgetting the one that just past on.
Dotti bought a book at Barnes and Noble on Alzheimer’s yesterday, where people wrote short stories about their own experiences caring for Alzheimer family members. Most of the stories included the Alzheimer’s Unit of a hospital, where their loved one was locked up and living. And here we are, out in the middle of nowhere, with no facilities for any sort of care beyond a normal house, and normal house accouterments. My mind bounces back and forth between the songs, “Going in Circles” by Three Dog Night, and “Brain Damage” by Pink Floyd. We have circular discussions daily with Mom, and these lines just won’t go away:
The lunatic is in my head.
The lunatic is in my head
You raise the blade, you make the change
You re-arrange me 'til I'm sane.
You lock the door
And throw away the key
There's someone in my head but it's not me.
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We are already pushed near to our limit, and we haven’t gotten close to the truly bad stages yet. And there are some very troubling issues with facing this particular problem with the woman who held my hand through some very hellish times in my childhood. I don’t want to let her down, after she tried so hard to take care of me. In some ways she failed, but she tried with all she had. Can I do less for her? And yet, I am trying to hold on to the tattered remains of what was my life before. Life has changed in so many ways the past few months, almost like being transported to a different planet. Starting over is not easy, but here we are. And there is this little gray haired creature with us that looks a lot like Mom used to, but appearances can be deceiving.
My cousin Fay put it best when she said, "If your Mom of the past could see how she is behaving today, she would be horrified." Fay is absolutely right. My mother was never selfish like this, nor mean spirited like this before. She always put my happiness ahead of her own. She was kind hearted and generous when she was younger.
Much of what Dotti and I had to deal with came directly from Mom's condition. But that didn't cut out the hurt that I felt every time Mom did something like this. Part of me knows this isn't really my mother doing these things, but part of me cannot break that connection.
The one thing that we needed the most—a break from dealing with this horrible situation—was the thing Mom least wanted to give us. We took it anyway, but she extracted a price for it.
• No hope of any of these things getting better—we lived without hope. Mom was only going to get worse. The contractor appeared to be doing as little as possible to meet his obligations towards us, and we had no reason to believe he would change his dishonest ways. The living conditions we were in were not going to get better with time. We were stuck in "Green Acres" and nothing was going to change that. Lastly, we were never going to have a life of our own. Any attempt that we made in that direction was met with opposition from Mom.
Why did we move down? To help Mom live her life with as little change as possible. We got no thanks. Everything we tried to do was met with opposition. Mom resented us far more as interfering meddlers than she ever considered us as helpful family. The whole thing had blown up in our faces, and we were left with a mess.
This event came at a very important time, critical even, because Dotti suddenly took a dive into depression from all of the stressors we were facing. She not only starting having panic attacks, but it was really just one panic attack that would not go away at all.
On Wednesday night of March 18, Dotti was overwhelmed with feelings of dread and a knot in her stomach. She was feeling so bad that she wanted to go to a doctor immediately. We were contemplating running up to Portland to get her to our personal family physician, and then I asked her if she would be willing to try my tape.
I had dealt with panic attacks myself back in 1990, and had created a tape where I spoke instructions on total body relaxation. I had got the script for the tape out of a book on stress, and I had made the recording for myself alone. It really helped during those days when I had stress overwhelming me and I had a class to teach. As it turned out, I later came across a guy in Vancouver who was taking medication for anxiety and I let him have a copy of the tape. He said it lowered the amount of medication that he had to take and he found it helpful.
Dotti was willing to try anything, just to calm down. The tape worked, and her stomach unknotted and she felt much better. But that was only a temporary fix, we both knew. Thursday morning was her WW meeting in Medford, and so, when she was feeling that knot in her stomach again, and even the tape only helped a little, we drove into Medford, and went to an "Immediate Care" clinic I had spotted there a week or two before.
When I had my stress and anxiety problems, I had never even heard of such a thing producing the symptoms I had. I thought I was having a heart attack or stroke, from what I was feeling. When I sought out help, I got no sympathy from the doctors I spoke with at first. They seemed to think I was faking it or looking for sympathy or something. I look back at that in disbelief today. How could they be so heartless, especially when the condition is widely recognized and the treatment is fairly straight forward? I went in with Dotti when she saw the doctor, first to give her my support when she obviously needed it so badly, and secondly, to make sure she didn't run into the same sort of lousy practices that I had.
However, my fears were unfounded, because the doctor was awesome, and completely in sympathy with Dotti's situation. He said that she was not just having a panic attack, but she was in depression, due to the duration of the problem and other things. (Considering our situation, it was no surprise that Dotti was depressed, or at least that conditions at home were exacerbating her condition.)
We walked out of the office with a couple of prescriptions that turned out to be very helpful for Dotti. She soon was not having the panic attacks. While she was still not comfortable at home, she was not overwhelmed completely by the situation.
It was here that we made the decision that we were going to have to leave, for our own health, if nothing else. At the same time, Mom was not happy with us being there. She treated all the other people in her life with respect and apparent caring, and reserved her other behaviors for us. She felt we were there to "control her life" and nothing else.
The only question was that of the date we would move. Dotti needed something to hold onto as a light at the end of the tunnel. I promised her that we would be out of there by her birthday in October. Financially, we had to dig ourselves out from under that building we had created, and now would get nothing in return for it, it seemed.
I spoke with Mom about the problem, knowing that she too was interested in getting us on our way, and she said that she had always intended to pay us back for our expenses in putting the building up, since the property was in her name alone. She couldn't put the entire cost on her mortgage, but she did cover most of it, and that freed us up to leave. At the same time, the building is a nice addition to her property and she should recover the cost at the time of sale. It also should speed up the sale, because it makes the property more appealing to someone who wants some extra space. With a couple of modifications it could be turned into a rental. Despite the character of the contractor, the building was built solidly and will last a long time, and it looks nice.
So, Dotti and I ended up eating a few thousand dollars over and above what she paid us, but she made it possible for us to unplug ourselves financially from Tiller, and to try and right our own ship, while leaving Mom in as good a shape as is possible under the circumstances.
Once the arrangements were made, Dotti and I drove up to Spokane to pick out a place to live. Dotti had her heart set on moving to Spokane, rather than back to Vancouver, and we found a place very quickly once we got there. We arrived in Spokane the morning of March 31, and had a lease in hand that evening. (The Internet helped a great deal in locating just the right place quickly.)
Dotti had one brief panic attack in Spokane, but it passed quickly and didn't return. She was definitely on the mend.
We were not okay yet. Not by a long shot. We felt like emotional hamburger, ground down to a pulp. I was having my own stress/anxiety problems and we suddenly had another move on our hands.
The move all seems a blur to me today. LeRoy and Tammy drove down from Spokane on Friday, March 10. They helped with our final packing. Then, Easter Sunday, we rented a truck from U-Haul in Roseburg, and started to load it immediately after getting it to Tiller. We ran out of time before we made too much progress. We got up early on Monday and dived in again.
We soon found that we didn't have enough room in the 26-foot truck and Dotti and I drove in to Canyonville and rented the only truck that they had available there: a 14-footer. It wasn't enough either, and we ended up leaving some things in Tiller that we really would rather have taken with us. But we were literally in no condition to make good choices at that time. If LeRoy and Tammy hadn't come down to help us move, I don't see how we could have ever gotten it done, even with the labor we hired to help.
When the last cubic foot was filled in the trucks, we closed them up and said goodbye to Mom, and set out on the road. LeRoy was driving the 14-foot truck, with the tow dolly carrying our Honda, Dotti and Tammy were driving the van, and I was driving the 26-foot truck. We formed a caravan that was to last Tuesday evening, with a stop in Roseburg on Monday for the night.
When we arrived in Spokane, I was not far removed from where Dotti was when we took her to the doctor. My resources had been drained and I had nothing left. I crawled off into bed and slept, hardly taking the time to say hi to Jim. It is only in looking back that I can see how bad off Dotti and I were emotionally while living in Tiller. What would have happened if we had remained there another month? Another 6 months, or longer? I shudder at the thought.
Mom has a next-door neighbor watching out for her, and many of her fellow church members. She has a step son from Medford who comes up to give her rides to town. For now she is okay, and if the house sells soon, Mom can move into assisted living and be as fine as she possibly can be under the circumstances. We would have liked for things to have turned out differently, but it was out of our control.
After months of doing next to nothing on my weight loss journey, other than logging down my weight each day, I am set to start over and see if I have it in me to get back on track and once again take charge of my own weight issues.
Wish me luck, I think I am going to need it.
7 years, 345 days on my journey; a lifetime to follow.
-Al-
6'3" 239.5/219.5/185.0±2.5/BMI:27.44/WK-414
Starting weight: 239.5
Target Weight Range: 185.0±2.5 pounds
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