Easy Rider

After getting Dad home after the bladder infection, things began to return to normal… or as normal as living with Lewy could be. On the surface, things seemed pretty much as they had been. We were offered Homecare, and Meals on Wheels began to come 4 days a week. Dad was falling regularly, but no one seemed to figure out what was causing the falls. I began to notice that often I’d find him staring off into space with a blank expression on his face and the tremor in his right hand had become quite pronounced. He also began to complain about “numbness” in his legs. Although he was seeing the Dr. on a regular basis, no one really put these things together.

Because we were living together at the time, we opened a joint bank account to run the household expenses through and I discovered that Dad simply couldn’t figure out what was going on. Dad had been an accountant and for him to be unable to reconcile simple checking account was a strong indication to me that something was really wrong. A few years ago, Dad had begun asking me to accompany him to the bank, and I’d wondered on occasion if he really understood the decisions he was making. Because he is very intelligent, the changes were probably only obvious to me. As time progressed, it became more and more difficult for him to sort out all his accounts and as his confusion increased, he began suspicious of me, accusing me of deliberately trying to confuse him.

Lewy didn’t often appear during this time, except at night. Often Dad would go to bed earlier than my daughter and I .  Often after a half hour or so, Lewy would come wandering downstairs, telling stories about people on the street, on the roof, washing his bedroom windows and partying.  It was easy to calm him down by opening the door and showing him there wasn’t anyone there.  Occasionally I resorted to the technique I had used when my children had bad dreams.  I’d open the door, or go outside and the return  telling Lewy that I’d told them to go away.  This would usually satisfy him, but he would often mention the rowdy partiers, or window washers in the morning.  Most of the time if I told him that it had been a dream he laugh and comment “But it seemed so real!” but other times, he’d get angry and insist he had seen what he had seen.

One evening I wasn’t feeling well, and went to bed early. Dad went to bed shortly afterwards, and some time later I was woken up by the sound of a loud argument from downstairs. I got up and stood at the top of the stairs listening to the argument.

“I told you, she left on that motorcycle!” Lewy angrily shouted.
“No, Grandpa, Mom went to bed early, she wasn’t feeling well.” was the patient response from Daughter.
“No, I saw her, she got up and went out.   I saw her she got into the car and then she drove off on the back of that motorcycle!”
“Do you think she was in a car?”
“No, I told you, she was on the back of that motorcycle and I don’t know who was driving it. I think it was that man from down the street!”
“Grandpa, I’m sure she is still here, I would have seen her if she left.”
“Don’t tell me what you saw, you’re just trying to confuse me.”

At this point I came downstairs and told Lewy that I hadn’t gone anywhere, that I’d been in bed. Dad turned and looked at me in puzzlement. “I knew that, are you feeling better now?”

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Ants on the wall

That summer (2008), Dad got a bladder infection. Even though I had spent some time working in the medical field, I had no idea. Dad went to bed one night just fine, but woke up very, very sick. He called me to his room, and told me he couldn’t get up or walk. I asked him if I should call the ambulance, but he said no, and with my help managed to get downstairs, so I could get him into my car to take him to the hospital. By the time we got to the back hall, he collapsed in a heap and nothing we did could get him on his feet again.

911 arrived within minutes and their examination failed to show anything wrong, but with Dad’s history of stroke, his congestive heart failure meant a trip to the hospital and his weakness meant a trip to the hospital. I requested that he be sent to a nearby hospital where his family Dr. had admitting privileges and fortunately my request was granted. So off he went. By the time I got there, the diagnosis was in. A bladder infection.

I expected that we’d be discharged with a prescription for antibiotics, but no, they started him on IV antibiotics and told me he’d be there for at least a few days. Who knew a bladder infection could be so serious? Unfortunately, there were no acute care beds available so he was moved to a “holding area” at the back of the ER. Even though there was more privacy, the front wall of the cubicle was simply a curtain and did little to block out the sounds of the busy emergency room. Voices, bells ringing, machines beeping, doors slamming, people crying out and all the rest. On top of this, there was absolutely no natural light and the fluorescent lights stayed on night and day. I thought this is enough to make anyone confused. That night when I visited, Dad was still OK, a little puzzled by all the fuss, uncomfortable on the stretcher, but lucid and oriented to time and place.

The next morning was a totally different story. When I got to the hospital, Dad was happily redecorating his room. As I walked in, he looked up at me and grinned, “You know, this isn’t so bad you know, all I need is a mirror on the wall over there, and I think I’d like to change the paint..oh and maybe those curtains. I really hate green you know.” Hello, Lewy!

He continued, “And then you know there are those ants. They are so strange.” “Ants?” I replied, “what ants?”…”the ones crawling up the wall, right there” he replied waving his hand toward the wall. “See, look, they crawl right up to that line there and then disappear. Isn’t that strange?” He said this with a grin, obviously delighted by the antics of his new roommates. I looked at the wall, seeing neither ants nor lines.

On checking with the staff, I learned that hallucinations and delusions are a common sign of bladder infections in the elderly. So, I didn’t worry too much, having been assured that the hallucinations were benign and would disappear in time. Eventually, they did, but not before he became so confused and disorientated that they had to assign an aide to sit with him 24/7 to make sure he didn’t wander out of the hospital. Foreshadows of things to come.

After 3 days watching Dad’s mental condition deteriorate and believing his condition wasn’t being helped by the atmosphere of the ER, I started making phone calls to find him a bed in a real hospital. After assuring the powers that be, that I didn’t care where he went as long as he got into a place with real beds, windows and some quiet so he could get an uninterrupted sleep, I was offered a bed in a small town hospital about an hour away from home. He was transferred by ambulance, and when I arrived that evening, he was settled, still very confused, but being treated like a king and was lapping up all the attention. Over the next couple of days, he began to improve and although the memories of the hallucinations remained, he became more and more lucid.

Or did he?

The day finally came when I got the phone call that he could be released. When I arrived at the hospital, Dad was sitting in his room intently looking out the window. “Hi Dad, what are you looking at?”, “The ants” he replied calmly. !!!!!

A quick and somewhat panicky conversation with the head nurse calmed me down. Yes there actually was an infestation of ants, and they had had to call exterminators to deal with the problem. It had been a wet summer and the ants were on the move.

The episode provided many chuckles over the next few years.

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The little red scooter.

The summer before Lewy began to appear on a regular basis, Dad had moved in with Sweetie K  (my daughter) and I.Lewy pretty much stayed away until night so our biggest concern was the falling and Dads loss of direction.  He had sold his car before moving in with us, replacing it with a shiny red motorized scooter.  He loved it, but would only go out if someone came with him. Early on he got himself well and truly lost. He took a wrong turn and needed help to get home. Fortunately there was enough charge in the battery, but I think it scared him.

 He was a speed demon, he refused to believe that the little turtle on the knob was comfortable walking speed, so evening walks became a challenge.  I’d set the speed control to turtle, and we’d begin.  We took the dog with us, and when I’d stop to pick up doggie deposits, I’d see him reach over and surreptitiously turn the knob to rabbit.  He’d then take off, bouncing over the cracks in the sidewalk, white hair streaming in the breeze, with me and the schnauzer running behind!
Slow down! I’d say, reaching over and turning the speed control knob. He’d agree, but then as The walk continued and I began to lag behind, I’d discover the knob turned back over to rabbit. Id have to watch hom like a hawk to keep his hands off of that darn knob. And was he tricky! I’d turn it to turtle, he’d wait until I was distracted and he’d turn it to rabbit. So much for a gentle evening stroll. They turned into a test of wills. When we got home he’d complain about how rough the scooter was and how it hurt his back. I’d suggest that slowing down might make the ride a little more smoother, but the next evening, I’d watch in frustration as he sped away from me. Was that a guffaw I heard?

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Hello Lewy

My father has Lewy Body Dementia, the second most common form of dementia after Alzheimer’s, but one that is relatively unknown, even among caregivers and physicians.  As a result I’ve spent a lot of time learning all I can from that source of all things, the Internet.  Recently I read an eBook account of the last few months of a Lewy Body suffers life written by his daughter and her husband who were his full time caregivers.  They often referred to him as “Lewy” to differentiate him from the person who had gotten lost in this strange and horrible disease.

Lewy first appeared in our family nearly 15 years ago.  He came in quietly, so quietly that we didn’t even know it.  He first appeared in the form of wild and violent dreams; so violent that my step mother refused to sleep in the same bed with Dad.  Lewy would leave vivid memories of the dreams, but we thought they were stress related .  At that time my step mother was in the early stages of Alzheimer’s and Dad was trying hard to keep it all togetherwan trying to pretend it wasn’t happening.

It wasn’t until several years later that Lewy began to appear more frequently, often getting directions confused.  “where are we?” he would ask, followed by the question “where are we going.”. My Dad is a naturally cautious man, an accountant by profession and he voluntarily began to avoid driving.  Even though he wouldn’t admit it, I think he was frightened of getting lost.  Lewy was making his presence known.

By this time my step mother was in care and Dad was devoted to making sure that she was taken care of, visiting her almost daily.  Lewy was biding his time, although occasionally appearing in the form of precipitous drops in blood pressure, fainting spells, and a worsening tremor.  Hospitalization after hospitalization accompanied by a battery of tests revealed nothing.  Lewy then began to play tricks with my Dads ability to comprehend his finances.  Dad asked me to accompany him tat bank appointments, and I soon was aware that he was having difficulty remembering or understanding what he had done.

I think Lewy was starting to come out more and more and at one point a physician friend suggested that Dad was suffering multi- infarct dementia, based on his history of stroke.  I discovered later that Multi-infarct dementia is one of the most common misdiagnosis for Lewy Body.  I was becoming increasingly concerned as Lewy began appearing more regularly, but when I mentioned Multi-infarct to Dads own physician, he brushed it off.

Soon Lewy began to visit regularly.  Falls became regular occurrences, he kept Dad from sleeping with bizarre dreams and he painted strange figures on walls.  Dad knew these things weren’t real, in fact he seemed amused by them, but not always.  Sometimes Lewy would waken him up shortly after going to bed and play games.  Dad was living with my daughter and I at the time.  Lewy would come downstairs demanding “where’s your Mom”. “she went to bed, Grandpa.”. “No she didn’t, I saw her ride off on that motorcycle”. “No, Grandpa, she went to bed”. “don’t get smart with me young lady, I know what’s going on!”

Needless to say things got tense around the house and I got drawn into the role of referee.  By this point Home Care were coming in twice a week and Meals on Wheels came with lunchmince I was working Daughter was in university and Dad didn’t seem to be able to figure out the appliances.  Probably a blessing.

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Dog Days of August

I’m in the home stretch of my annual vacation (5 days left beore returning to work). I’ve had a very restful staycation spent puttering around the house and getting a feel for what retirement might look like. I must admit though, that when retirment comes (not for another 5 or 7 yeaars though), I will need to be a bit more self disciplined with my time. But all in all, I feel I’ve used my time productively and am feeling that familiar, I’m ready to get back in the saddle feeling.

This morning I’ve spent a couple of hours catching up on some of my blog reading, and have found myself mightly inspired to begin blogging again. I’ve also determined to work on my sleep hygiene, which I’ve discovered is contributing to my vision problems. Staying up too late on Facebook and reading books is not healthy for mind or body, although it can be inspiriing, but all too often I end up playing games. So the plan is to try to get into bed at a decent time, pre-midnight will do quite nicely, and drag my sorry self out of bed by 6.

The plan is to spend that first hour attempting to reconnect with the world around me, saying Morining Prayer and then doing some productive internet work before heading off to the office for 9. You’ll know how I’m doing here.

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Take the money and run? I don’t think so.


Something’s been bugging me all afternoon. Earlier today, while checking out my Facebook, I found a reply to a post on the wall of a “de-churched” friend. The post was in the “I’m spiritual but not religious” vein, and didn’t really bother me too much. What really got under my skin though, was a comment that said “Keep away from the church, all they want is your money.”

Really? REALLY?

So, to respond to the accusation that all churches just “want your money”, I would like to clarify what most churches do with “all that money”. Although there are some glaring examples to the contrary, most churches understand the money they have been given by their members as a sacred trust and to be used to further the mission of the church, a mission to care for others. I began by thinking about all the ways that my tiny little church uses “all that money”. In the past 3 months, we have:

* Provided and served lunch to over 150 inner city residents.
* Packed 70 bags containing socks, mitts, toiletries, and blankets to be distributed to the homeless for Christmas.
* Packed and sent 50 shoeboxes to Third World Countries.
* Supported an individual who is working on a project to raise awareness of poverty in Canada.
* Distributed more than 100 hampers of food to the poor.
* Supported a family during a drawn out death of a family member by assisting with round the clock care.
* Supported a family after the sudden death of a loved one.
* Held funeral services for both of the above, including providing the funeral lunch (at no cost).
* Provided meeting space at minimal cost to 3 self help groups.

As the only paid member at the church, I am keenly aware that my salary is the largest line item on the budget. Yes, I am paid a reasonable wage, but in comparison for others with similar levels of education, my salary would be considered low.

But more to the point, what do members of the church get for their money? First of all, they have 24 hour a day, 7 day a week emergency support for all manner of things. In the past 3 months I have spent untold hours meeting with people (including those who are not members of the church) giving them a uncritical, caring and listening ear as they have dealt with some very serious issues; issues such as addiction, sexual orientation, life threatening health issues, marital problems, employment issues, job loss, and grief. I sit on a number of community boards, organize events to educate and mobilize people to address community issues such as domestic violence and homelessness. And of course, I spend a great deal of time praying with and for the members of my church (and others who come seeking help–often those who have nowhere else to turn) and helping them develop their own spirituality.

I don’t know what the commenter means by being spiritual, but I would assume that it has something to do with a relationship to the Divine. Most religious systems provide a structure so that this relationship to the Divine can be expressed through activities that are focused on making the world a better place. Members of churches are simply people who are religiously spiritual, people who understand that a spirituality that does not result in serving others is self-indulgent and not a true spirituality at all.

Yes, institutional religion does require a financial commitment from its members. Ad yes, we are almost always struggling to keep the budget balanced which often results in requests for more money, but that money isn’t spent to support the institution, it is spent to make it possible to carry our our mission to the world. I wonder how much those who call themselves “spiritual but not religious” give of their time and finances in the way that members of religious congregations do?

Just wondering….

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What about the young ‘uns?…a bit of a rant.

There was a short posting over at RevGals a few days (weeks?) ago that I’ve been mulling over. The posting spoke about how the next generation of church members (30-40’s) are not interested in getting involved in church governance. Some of the reasons listed included timing of meetings (during the day) and certainly were valid, but it got me to thinking….

Might it be that the reason that these members aren’t interested is because of their much touted “distrust of institutions”? I’ve been spending time with some union folks lately and I certainly hear the same concerns from them that we are voicing in the church. I know that I’d love to have more of our 30-40 year olds involved on our Vestry…and I know the Vestry would be delighted to have them join in, but when they are asked, their automatic response is “No, I don’t think so.” They don’t even give us a chance to be dismissive of their ideas, or to tell them “Oh, yes, we tried that before and it didn’t work.” They don’t even give us a chance to say, “We’ll work around your schedule as best we can.” Our attempts to involve these valuable members of our congregation are met with dismissal.

When I speak with the union leaders I know, or the community organizations I hear much the same story. It seems that our younger members could care less about the important work of keeping our organizations going. And yes, I know that maybe they don’t think that our institutions are valuable and important…but so far I haven’t heard them come up with any alternatives. Who, I ask you, will do some of the important work that our civic institutions do…who will speak out on behalf of the ordinary working folk, who will push back against unjust public policy, who will collect the food for the food bank, provide volunteer sandwich makers for the homeless, and all the other things that churches and other service organizations do?

And yes, I know these young parents are busy, but I was busy too when I was their age, I know what it is to juggle kids, daycare, skating lessons, 4-H, a full time job, (actually 2, I was a ranchers wife), but I also found time to sit on several community and church boards. I know what it was to have older members look at me with “that look” and ignore my ideas. I remember the frustration of being told “that’ll never work here”, but I kept on and eventually some of my ideas DID get listened to and tried, and in the meantime I learned a lot about politics and how to “make friends and influence people.”

If we old folks have indeed but barriers in the way of the next generation becoming involved, then please tell us, but if it is simply a matter that they distrust institutions and the present governing structure, please GET OVER IT. We need you to be a part of making change. We know that what we have doesn’t always work as it should, and we’re open to making things better. But we can’t do it without your input. Just sayin’

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