When my father was in his late-60s he bought himself a moped. It wasn't something he was actually in the market for, it was more of an impulse buy . . . mixed in with a little bit of peer pressure.
It seems Dad and his golfing buddies were on their way home from their weekly match when they found a moped for sale. I have no idea if it was sitting in someone's front yard or if, for some reason, they stopped at a moped store. Regardless, Dad came home with a moped.
I can picture it. Dad looking at the moped trying to decide if Mom would be thrilled or dismayed. I am sure the memory of the surprise sail boat he purchased years before was fresh in his mind. I can almost hear his friends tell him he really needed a moped.
"Think about it Don. Your grandchildren can ride it around the block. You can use it to take garbage to the dumpster. I bet Chris can ride it down to the beach."
I don't think Mom ever sat on it. But Dad's friends were mostly right. The grandchildren loved riding around the block on it. And I can still picture Dad riding to the dumpster, a trash bag perched on the back.
All was well and Dad thoroughly enjoyed his new toy. Until the day he showed up at my backdoor with blood dripping from the bridge of his nose and a huge scrape on his arm.
"The brakes didn't work on the moped. I didn't want your mother to see this. Can you help me clean up and send the boys out to get the leaves out of the headlight?"
It was difficult not to laugh at him, and I pointed out Mom was certain to see the cut on his nose, but we cleaned the scrape, stemmed the flow of blood and checked to make certain no fingers were broken. Dad was none the worse for wear. The moped had leaves stuck in the headlight and the mirror was bent a little, but the boys were able to make it look almost like new.
I am certain the scrapes and cut didn't go unnoticed by Mom, but to her credit, she never said anything. And Dad learned to slow down a little while driving to the dumpster.
Sunday, June 29, 2014
Sunday, June 22, 2014
The cold, hard, reality
Note: this is a very honest and frank appraisal of what is going to happen to Mom. There is no sunshine and roses here. If this makes you uncomfortable, I suggest you skip this blog today.
There is a cold, hard, reality to dementia. . . one does not get better. Yes, they have drugs that can slow the progression, but there is no cure and in the end the person you love is simply a shell of the person you once knew.
That fact hit home this week while I was visiting Mom.
I was looking for her toothbrush and opened her medicine cabinet door. Taped to the inside of the door was a list of Mom's needs -- a handy reference list for staff.
Mom is fading quickly. Or maybe not. Maybe it is a slow, painful deterioration. I suppose it depends on the day and the perspective.
The list inside Mom's medicine cabinet included things like: needs to be reminded when it is time to eat; needs assistance in the bathroom; needs assistance dressing. It also lists her mental state as: severely mentally impaired.
Wow. That's a hard one to take. We all knew it. But there it was, written in Bic pen blue -- severely mentally impaired.
To be honest, we don't know if Mom has dementia as a result of several strokes or if she truly does have Alzheimer's Disease. The only way to tell if she has Alzheimer's Disease is to do an autopsy after she passes. Since that is simply not going to happen I guess we will never know. Does it really matter?
We look back and say to one another, "Remember when Mom (fill in the blank)? We should have known then there was something wrong." Well, yeah. But deep down we all kind of knew there were things Mom was doing that were not normal. Even Mom knew she was "slipping." She wrote me that in a birthday card six year ago: "I know I am slipping, but I do the best I can."
But what could have been done? Very little, actually.
The reality of all this is this: Mom is a pretty healthy individual -- except for the dementia. What will happen, probably sooner than we expect, is Mom will eventually not recognize us. She may become delusional. She may become short-tempered and hostile. She will eventually lose the ability to swallow. She will, eventually, lose all motor function, she may also lose the ability to smile, to sit without support and to hold her head up. Her reflexes will become abnormal and her muscles will become rigid. It's not a pretty picture.
Frankly it seem pretty unfair.
There is a cold, hard, reality to dementia. . . one does not get better. Yes, they have drugs that can slow the progression, but there is no cure and in the end the person you love is simply a shell of the person you once knew.
That fact hit home this week while I was visiting Mom.
I was looking for her toothbrush and opened her medicine cabinet door. Taped to the inside of the door was a list of Mom's needs -- a handy reference list for staff.
Mom is fading quickly. Or maybe not. Maybe it is a slow, painful deterioration. I suppose it depends on the day and the perspective.
The list inside Mom's medicine cabinet included things like: needs to be reminded when it is time to eat; needs assistance in the bathroom; needs assistance dressing. It also lists her mental state as: severely mentally impaired.
Wow. That's a hard one to take. We all knew it. But there it was, written in Bic pen blue -- severely mentally impaired.
To be honest, we don't know if Mom has dementia as a result of several strokes or if she truly does have Alzheimer's Disease. The only way to tell if she has Alzheimer's Disease is to do an autopsy after she passes. Since that is simply not going to happen I guess we will never know. Does it really matter?
We look back and say to one another, "Remember when Mom (fill in the blank)? We should have known then there was something wrong." Well, yeah. But deep down we all kind of knew there were things Mom was doing that were not normal. Even Mom knew she was "slipping." She wrote me that in a birthday card six year ago: "I know I am slipping, but I do the best I can."
But what could have been done? Very little, actually.
The reality of all this is this: Mom is a pretty healthy individual -- except for the dementia. What will happen, probably sooner than we expect, is Mom will eventually not recognize us. She may become delusional. She may become short-tempered and hostile. She will eventually lose the ability to swallow. She will, eventually, lose all motor function, she may also lose the ability to smile, to sit without support and to hold her head up. Her reflexes will become abnormal and her muscles will become rigid. It's not a pretty picture.
Frankly it seem pretty unfair.
Sunday, June 15, 2014
Happy Father's Day
Today is Father's Day so naturally my thoughts have turned to my father, a man who did everything for his daughters.
So many thoughts, so many memories. The trips we took, the expectations we would always be on our best behavior, the eyebrows that knit together when we weren't, the toys, the unusual vehicles and his building projects . . .
I was in eighth grade when Dad came home from work one day with a wooden, creosote-soaked utility pole in the back of his pickup.
"I think we'll build a tree-house," he said.
It was a matter-of-fact comment and, knowing our father as we did, my younger sister and I were not that surprised. Of course. Dad had another project.
I have no idea how he came up with this plan. I have no clue as to what made him look at a utility pole and decide, "Hey, I think I'll a tree house." But Dad's mind never seemed to stop planning and designing so when he showed us his rough sketch of what our tree-house would look like, we never doubted it would be awesome.
It was going to be an A-frame, built on cross-beams which were bolted to the pole and braced by two-by-fours. There would be windows on each end and a trap door built into the floor for access.
I recall there was some debate as to where the pole should be placed. I think Mom would have liked it to be out in the middle of the pasture away from the house, but Dad convinced her it would blend in nicely with the maple trees in the backyard. He was right. In the summer when the leaves filled the trees it was like we were sitting in a tree and not on a pole 15 feet off the ground.
The pole was placed in the ground -- rather deeply as Dad didn't want the thing to sway -- and the next week the cross beams were bolted to the pole.
Everything was built with scrap lumber. The roof was plywood with round holes cut into it. Something that had probably outlived its usefulness at the factory Dad managed. The beams for the platform and two-by-fours for the roof were left-overs from the barn building project we had completed years before as was the wood for the sides. Even the tar paper for the roof was left over from some project -- probably our screened porch, which had been completed before I started kindergarten.
My sister and I helped Dad along the way by holding wood, handing him drills and looking for dropped nails.
The most frightening part of the project was when Dad nailed the plywood for the roof to the frame. Dad looped a rope through one of the holes in the plywood and threw the rope over a branch of a tree. My sister and I hoisted the plywood up and Dad swung around the open end of the platform, slid the plywood into place and drove a couple of nails in to hold it until he could use a ladder to nail the rest of it.
To this day I can remember holding that end of the rope, watching Dad grasp the frame, swing around the end of the tree-house, drive a nail in place while hanging by one arm and then swing back onto the platform. All the while I was muttering under my breath, "This isn't worth it. This isn't worth it."
But we managed to get the roof up with Dad remaining unscathed.
The project took several weekends, punctuated by late-spring snows, freezing rain -- you know, your typical miserable Michigan spring.
Just before we put the end pieces in place, Mom produced an old bookshelf from the basement, which we decided would look best under a window. We placed a lamp on it and ran a heavy-duty extension cord from the barn for electricity.
Every week that summer we would ride our bikes to the local drug store to scope out the latest editions of Archie comic books or Tiger Beat magazine and spend countless hours in the tree-house reading. We also spent many summer nights sleeping up there, listening to music (WLS out of Chicago) and eventually drifting off to sleep.
Years later, when our own children were small, Dad and the boys built another A-frame tree-house in an apple tree in the yard of their retirement home. I've driven past both homes and the tree-houses are gone. Ravaged, I am sure, by the elements and age. They are now distant memories.
I have searched all the photos Mom so carefully preserved over the years and I can't fine one photo of either tree-house.
Ahh, but the memories, they linger.
So many thoughts, so many memories. The trips we took, the expectations we would always be on our best behavior, the eyebrows that knit together when we weren't, the toys, the unusual vehicles and his building projects . . .
I was in eighth grade when Dad came home from work one day with a wooden, creosote-soaked utility pole in the back of his pickup.
"I think we'll build a tree-house," he said.
It was a matter-of-fact comment and, knowing our father as we did, my younger sister and I were not that surprised. Of course. Dad had another project.
I have no idea how he came up with this plan. I have no clue as to what made him look at a utility pole and decide, "Hey, I think I'll a tree house." But Dad's mind never seemed to stop planning and designing so when he showed us his rough sketch of what our tree-house would look like, we never doubted it would be awesome.
It was going to be an A-frame, built on cross-beams which were bolted to the pole and braced by two-by-fours. There would be windows on each end and a trap door built into the floor for access.
I recall there was some debate as to where the pole should be placed. I think Mom would have liked it to be out in the middle of the pasture away from the house, but Dad convinced her it would blend in nicely with the maple trees in the backyard. He was right. In the summer when the leaves filled the trees it was like we were sitting in a tree and not on a pole 15 feet off the ground.
The pole was placed in the ground -- rather deeply as Dad didn't want the thing to sway -- and the next week the cross beams were bolted to the pole.
Everything was built with scrap lumber. The roof was plywood with round holes cut into it. Something that had probably outlived its usefulness at the factory Dad managed. The beams for the platform and two-by-fours for the roof were left-overs from the barn building project we had completed years before as was the wood for the sides. Even the tar paper for the roof was left over from some project -- probably our screened porch, which had been completed before I started kindergarten.
My sister and I helped Dad along the way by holding wood, handing him drills and looking for dropped nails.
The most frightening part of the project was when Dad nailed the plywood for the roof to the frame. Dad looped a rope through one of the holes in the plywood and threw the rope over a branch of a tree. My sister and I hoisted the plywood up and Dad swung around the open end of the platform, slid the plywood into place and drove a couple of nails in to hold it until he could use a ladder to nail the rest of it.
To this day I can remember holding that end of the rope, watching Dad grasp the frame, swing around the end of the tree-house, drive a nail in place while hanging by one arm and then swing back onto the platform. All the while I was muttering under my breath, "This isn't worth it. This isn't worth it."
But we managed to get the roof up with Dad remaining unscathed.
The project took several weekends, punctuated by late-spring snows, freezing rain -- you know, your typical miserable Michigan spring.
Just before we put the end pieces in place, Mom produced an old bookshelf from the basement, which we decided would look best under a window. We placed a lamp on it and ran a heavy-duty extension cord from the barn for electricity.
Every week that summer we would ride our bikes to the local drug store to scope out the latest editions of Archie comic books or Tiger Beat magazine and spend countless hours in the tree-house reading. We also spent many summer nights sleeping up there, listening to music (WLS out of Chicago) and eventually drifting off to sleep.
Years later, when our own children were small, Dad and the boys built another A-frame tree-house in an apple tree in the yard of their retirement home. I've driven past both homes and the tree-houses are gone. Ravaged, I am sure, by the elements and age. They are now distant memories.
I have searched all the photos Mom so carefully preserved over the years and I can't fine one photo of either tree-house.
Ahh, but the memories, they linger.
Sunday, June 8, 2014
But there is a catch . . .
There was only one catch and that was Catch-22, which specified that a
concern for one's own safety in the face of dangers that were real and
immediate was the process of a rational mind. Orr
was crazy and could be grounded. All he had to do was ask; and as soon
as he did, he would no longer be crazy and would have to fly more
missions. Orr would be crazy to fly more missions and sane if he didn't,
but if he was sane, he had to fly them. If he flew them, he was crazy
and didn't have to; but if he didn't want to, he was sane and had to.
Yossarian was moved very deeply by the absolute simplicity of this
clause of Catch-22 and let out a respectful whistle. -- Joseph Heller, Catch-22
When it became obvious we could no longer care for Mom at home, the decision to place her in a nursing home did not come easily. I still have dreams where my father tells me that my sisters and I didn't do enough for Mom. It's a guilt thing, I know, but it doesn't make it any easier.
Living a nursing home had been my parents biggest fear. We all knew they did not want that. So it is easy to think, "I should have done more. I can probably do it again. Maybe I should bring her home."
But no one imagined Mom would have dementia and the care she would need. And looking back, it is easy to forget the never-ending care. It was constant and unrelenting. From the time she got up in the morning -- generally 6 a.m. -- until the time she went to bed at night, someone had to be with her or very real panic attacks would ensue. It is far, far different from taking care of a small child with separation anxiety. Trust me on that one..
So we spent a lot of time looking at homes for Mom. There were those we checked off the list immediately as not a place for Mom to live out her remaining years. There were those with waiting lists. There were those that would not return our calls to set up an appointment to visit.
In the end we are quite happy with the home we chose. The staff is friendly. It is open, airy, pleasant, there are plenty of activities, the common areas are set up to look like home and her room has a large bay window.
And it is not cheap. Few nursing homes are.
Few people realize the cold, hard reality of financing a stay in a nursing home.
If you have a lot of money (and I mean a lot of money) then there are probably few financial worries, but if you are like most of us, the concern is very real.
As my parents grew older, Dad always said he was afraid he would out-live his money. That wasn't the case for Dad as he passed away in 2011 at the age of 90. But there is a looming concern of what is going to happen to Mom when the nest-egg she and Dad scrimped and saved for is gone.
And of course there is a catch.
When we were looking for a nursing home for Mom, one of the first questions we asked was whether or not the home accepted Medicaid residents. Some do. Some don't. The home Mom is in does not. Which means when Mom's money is gone my sisters and I will have to make up the difference between her income (social security and her surviving veteran's benefits) and the actual cost of the home -- about $2000 a month. Or we can move her to a home that accepts Medicaid.The waiting lists to get in are years long.
So needless to say we are careful with Mom's remaining money. We don't begrudge Mom the best care we can afford, but there is the concern of providing for our own nest-eggs once she runs out of money, verses the concern of having to disrupt Mom's life again. It's a blurry line of where one responsibility ends and where the next begins.
The cost of a nursing home is based on the amount of care the resident needs. A point system is used and when a resident reaches a certain point level, the cost increases. Mom is about 15 points away from going up a level.
And there is another catch.
When we brought Mom to the nursing home last August we were asked if we wanted to use the pharmacy the nursing home uses. It sounded like a great idea. They would keep track of her medication needs, we would no longer have to run to the pharmacy at various times during the month and everything would be wonderful.
It is and it isn't.
Mom has supplemental prescription insurance that covers the cost of her medication -- that is, it covered the cost of her medication at the discount pharmacy we were using. The pharmacy the nursing home uses is a little more expensive. Between the premiums for prescription insurance and the cost of the medication, it's about $200 a month. It's a long way from what the medication would cost without insurance, and we are grateful for that, but it still is an expense and we are watching our nickles and dimes. So my sister talked to the nursing home about switching pharmacies -- telling them we would pick up Mom's prescriptions.
Nothing is life is that simple or cut and dried. It seems if we switch pharmacies, the pills would be dispensed in pill bottles, not the blister packs the current pharmacy uses. It would mean additional points to Mom's point tally, bringing Mom up another level of care and adding $300 to her monthly bill.
Sigh. Joseph Heller's book, Catch 22, is one of my favorites. I never thought I'd be living it.
_____
When it became obvious we could no longer care for Mom at home, the decision to place her in a nursing home did not come easily. I still have dreams where my father tells me that my sisters and I didn't do enough for Mom. It's a guilt thing, I know, but it doesn't make it any easier.
Living a nursing home had been my parents biggest fear. We all knew they did not want that. So it is easy to think, "I should have done more. I can probably do it again. Maybe I should bring her home."
But no one imagined Mom would have dementia and the care she would need. And looking back, it is easy to forget the never-ending care. It was constant and unrelenting. From the time she got up in the morning -- generally 6 a.m. -- until the time she went to bed at night, someone had to be with her or very real panic attacks would ensue. It is far, far different from taking care of a small child with separation anxiety. Trust me on that one..
So we spent a lot of time looking at homes for Mom. There were those we checked off the list immediately as not a place for Mom to live out her remaining years. There were those with waiting lists. There were those that would not return our calls to set up an appointment to visit.
In the end we are quite happy with the home we chose. The staff is friendly. It is open, airy, pleasant, there are plenty of activities, the common areas are set up to look like home and her room has a large bay window.
And it is not cheap. Few nursing homes are.
Few people realize the cold, hard reality of financing a stay in a nursing home.
If you have a lot of money (and I mean a lot of money) then there are probably few financial worries, but if you are like most of us, the concern is very real.
As my parents grew older, Dad always said he was afraid he would out-live his money. That wasn't the case for Dad as he passed away in 2011 at the age of 90. But there is a looming concern of what is going to happen to Mom when the nest-egg she and Dad scrimped and saved for is gone.
And of course there is a catch.
When we were looking for a nursing home for Mom, one of the first questions we asked was whether or not the home accepted Medicaid residents. Some do. Some don't. The home Mom is in does not. Which means when Mom's money is gone my sisters and I will have to make up the difference between her income (social security and her surviving veteran's benefits) and the actual cost of the home -- about $2000 a month. Or we can move her to a home that accepts Medicaid.The waiting lists to get in are years long.
So needless to say we are careful with Mom's remaining money. We don't begrudge Mom the best care we can afford, but there is the concern of providing for our own nest-eggs once she runs out of money, verses the concern of having to disrupt Mom's life again. It's a blurry line of where one responsibility ends and where the next begins.
The cost of a nursing home is based on the amount of care the resident needs. A point system is used and when a resident reaches a certain point level, the cost increases. Mom is about 15 points away from going up a level.
And there is another catch.
When we brought Mom to the nursing home last August we were asked if we wanted to use the pharmacy the nursing home uses. It sounded like a great idea. They would keep track of her medication needs, we would no longer have to run to the pharmacy at various times during the month and everything would be wonderful.
It is and it isn't.
Mom has supplemental prescription insurance that covers the cost of her medication -- that is, it covered the cost of her medication at the discount pharmacy we were using. The pharmacy the nursing home uses is a little more expensive. Between the premiums for prescription insurance and the cost of the medication, it's about $200 a month. It's a long way from what the medication would cost without insurance, and we are grateful for that, but it still is an expense and we are watching our nickles and dimes. So my sister talked to the nursing home about switching pharmacies -- telling them we would pick up Mom's prescriptions.
Nothing is life is that simple or cut and dried. It seems if we switch pharmacies, the pills would be dispensed in pill bottles, not the blister packs the current pharmacy uses. It would mean additional points to Mom's point tally, bringing Mom up another level of care and adding $300 to her monthly bill.
Sigh. Joseph Heller's book, Catch 22, is one of my favorites. I never thought I'd be living it.
Monday, June 2, 2014
Diamond or stone?
My sisters and I have a way to describe Mom on any given day. Diamond or stone.
We like the diamond days. The days Mom might say something clever and give us a little grin. It is those days we catch a glimpse of the woman she once was. But diamond days can just as quickly turn to stone and Mom will sink into her fog where no one knows where she is or understand her when she asks a question.
It can be rather frustrating. At times Mom will try to converse. And we want to have a conversation with her, we truly do. But she seldom speaks in full sentences and her words are often not cohesive. We can't ask her to repeat herself. Either she can't remember what she said or she doesn't really know what it was she said in the first place.
So we often find ourselves conversing amongst ourselves and not including her. Someone who has never dealt with an individual with dementia may think it is rude. And perhaps it is. But it simply is not possible to include Mom in a conversation.
The other day when I arrived at the nursing home, I found Mom in the lounge watching television with a group of women. She was -- as always -- happy to see me and we walked back to her room together. However, Mom had accidentally pushed the door lock on the door to her room when she left and she was locked out.
"Just stay here a minute Mom, I'll go get a key." Yes, she could go with me, but Mom doesn't walk very fast and I just wanted to find a staff member and get a key. Ten seconds. Tops.
I turned to leave and she started to follow. "Just stay here Mom. I'll be right back."
No dawning of comprehension. Nothing. Just a determined 91 year old insistent she was going to follow me as I hunted down a key.
"Why are you leaving me? Did I do something wrong?"
"I'm not leaving you Mom. I'm getting a key."
It is so hard not to be impatient. It's so hard to do the right thing. But I took her arm and escorted her down the hall, found a staff member, turned around and walked her back to the room while she asked over and over again, "Are we going somewhere? Do I need a coat?"
Some days are like that I guess.
We like the diamond days. The days Mom might say something clever and give us a little grin. It is those days we catch a glimpse of the woman she once was. But diamond days can just as quickly turn to stone and Mom will sink into her fog where no one knows where she is or understand her when she asks a question.
It can be rather frustrating. At times Mom will try to converse. And we want to have a conversation with her, we truly do. But she seldom speaks in full sentences and her words are often not cohesive. We can't ask her to repeat herself. Either she can't remember what she said or she doesn't really know what it was she said in the first place.
So we often find ourselves conversing amongst ourselves and not including her. Someone who has never dealt with an individual with dementia may think it is rude. And perhaps it is. But it simply is not possible to include Mom in a conversation.
The other day when I arrived at the nursing home, I found Mom in the lounge watching television with a group of women. She was -- as always -- happy to see me and we walked back to her room together. However, Mom had accidentally pushed the door lock on the door to her room when she left and she was locked out.
"Just stay here a minute Mom, I'll go get a key." Yes, she could go with me, but Mom doesn't walk very fast and I just wanted to find a staff member and get a key. Ten seconds. Tops.
I turned to leave and she started to follow. "Just stay here Mom. I'll be right back."
No dawning of comprehension. Nothing. Just a determined 91 year old insistent she was going to follow me as I hunted down a key.
"Why are you leaving me? Did I do something wrong?"
"I'm not leaving you Mom. I'm getting a key."
It is so hard not to be impatient. It's so hard to do the right thing. But I took her arm and escorted her down the hall, found a staff member, turned around and walked her back to the room while she asked over and over again, "Are we going somewhere? Do I need a coat?"
Some days are like that I guess.
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