It's hard to believe that another year has come and gone.
It is time for the Christmas Party at the home where my husband is a resident.
It is a big event at the home. The choir has practiced, along with the Bell choir and the
rhythm band. I help get everyone situated in their proper places. I place my husband in the last row against the wall. He is now in a broda chair. His only method of movement is now with a lift. We more than likely will not get any eye contact. However one never knows when Lewy will let him have a moment of himself. And sure enough for just a brief moment he lifted his head and endeavored to sing,making movement with his lips. Then he was gone again. That's just like Lewy, unfortunately he is in control.
Most of the time it seems to take awhile for him to recognize me but who really knows. The other day I was teasing him about not giving me eye contact. " Look at me, it's your wife, Ruth." "Are you mad at me, then of course you have no reason to be mad at me, right." He responded,"precisely."So I endeavor to carry on a one sided conversation as if it is normal, and really when you come to think of it, it is the 'new normal.'
Wednesday, 16 December 2015
Tuesday, 13 October 2015
I LOVE YOU TOO!
It has been a very emotional week.
Our Son flies into Edmonton, Alberta from Phoenix, Az. every Thanksgiving weekend to visit his dad.
Lewy is beginning to take up more and more of Steve's time. For the first two hours of the visit, he came and went like a revolving door. It was this way for most of the weekend.
Jeff was flying into Edmonton and out of Calgary in order to get a quick visit with his sister and brother-in-law who live in Okotoks. Our plan was to spend a couple of hours before heading south. I finished feeding him his breakfast and took him to the lounge. Our son Jeff, talked with him, bringing up good old memories, like where we were when we heard Elvis died. We got an emotional response from that, which gave us some indication that he was with us. Jeff read from the Bible and prayed with him and again there were little rays of responses coming through. Within a few minutes he left with very little sign of returning for awhile, as he seemed to fall into a deep sleep.
I came back today at lunch hour and his responses were very positive. I knew he recognized me and wanted to say something, which I only understand as a mumble.
The Telford singers ( a choir of 40 some voices), were coming to perform later. I fed him his lunch and we went to the lounge for the performance. Steve is very musical, however he has shown very little response to music as of late. Today it was different. He was emotional through every song which also made me a basket case!!
The group sang the song 'I love you to,' by Tom Hall.
It just made life so simple, and full of pleasure at that moment that I want to share it with you:
I love little baby ducks
Old pick-up trucks
Slow moving trains and rain
I love little country streams
Sleep without dreams
Sunday School in May and hay
And I love you too.
I love leaves in the Wind
Pictures of my friends
Birds of the World and Squirrels
I love coffee in a cup
Little fuzzy pups
Bourbon in a glass and grass
And I love you too.
I love honest open smiles
Kisses from a child
Tomatoes on the vine and onions
I love winner's when they cry
Loser's when they try
Music when it's good and life
And I love you too!
What a beautiful view of life!!
Our Son flies into Edmonton, Alberta from Phoenix, Az. every Thanksgiving weekend to visit his dad.
Lewy is beginning to take up more and more of Steve's time. For the first two hours of the visit, he came and went like a revolving door. It was this way for most of the weekend.
Jeff was flying into Edmonton and out of Calgary in order to get a quick visit with his sister and brother-in-law who live in Okotoks. Our plan was to spend a couple of hours before heading south. I finished feeding him his breakfast and took him to the lounge. Our son Jeff, talked with him, bringing up good old memories, like where we were when we heard Elvis died. We got an emotional response from that, which gave us some indication that he was with us. Jeff read from the Bible and prayed with him and again there were little rays of responses coming through. Within a few minutes he left with very little sign of returning for awhile, as he seemed to fall into a deep sleep.
I came back today at lunch hour and his responses were very positive. I knew he recognized me and wanted to say something, which I only understand as a mumble.
The Telford singers ( a choir of 40 some voices), were coming to perform later. I fed him his lunch and we went to the lounge for the performance. Steve is very musical, however he has shown very little response to music as of late. Today it was different. He was emotional through every song which also made me a basket case!!
The group sang the song 'I love you to,' by Tom Hall.
It just made life so simple, and full of pleasure at that moment that I want to share it with you:
I love little baby ducks
Old pick-up trucks
Slow moving trains and rain
I love little country streams
Sleep without dreams
Sunday School in May and hay
And I love you too.
I love leaves in the Wind
Pictures of my friends
Birds of the World and Squirrels
I love coffee in a cup
Little fuzzy pups
Bourbon in a glass and grass
And I love you too.
I love honest open smiles
Kisses from a child
Tomatoes on the vine and onions
I love winner's when they cry
Loser's when they try
Music when it's good and life
And I love you too!
What a beautiful view of life!!
Monday, 5 October 2015
YOUR LOVED ONE'S BOSS
Doctors, neurologists, mental health nurse, home care; are all there to serve you and your loved one.
Don't be afraid to ask questions.
Good family doctors usually know the bases of many diseases and are skilled at knowing when to refer you to specialists.
Depending on the age of the individual, it is just not good enough to have your loved one assessed by having them draw the hands on a clock, count backwards in three's starting at 100, remember the objects, etc..
Some 10/12 years ago when the neurologists called up and said; according to the symptoms he is showing, your husband has Lewy Body dementia. My response was silence, and his response was, " you more than likely have not heard of this dementia." And my response was, "no I have never heard of such."
I went immediately to the internet, and came up with a wealth of information. I passed some of this information along to our family doctor who seemed almost as unfamiliar with the term as I was. I gave him some information I had copied from the Mayo Clinic and The LBDA and he was happy to take them.
The best advocate for your loved one is YOU. Your are the boss and the health care professionals are a part of the team. Educate yourself. If you feel that there has not been a proper diagnoses than you need to advocate for more tests
While I highly respect the staff at the Extendicare from the laundry to the manager. I am the boss in terms of my husband's care and I don't say that disrespectfully and neither do I abuse my boundaries.
Arm yourself with knowledge for KNOWLEDGE IS POWER.
Don't be afraid to ask questions.
Good family doctors usually know the bases of many diseases and are skilled at knowing when to refer you to specialists.
Depending on the age of the individual, it is just not good enough to have your loved one assessed by having them draw the hands on a clock, count backwards in three's starting at 100, remember the objects, etc..
Some 10/12 years ago when the neurologists called up and said; according to the symptoms he is showing, your husband has Lewy Body dementia. My response was silence, and his response was, " you more than likely have not heard of this dementia." And my response was, "no I have never heard of such."
I went immediately to the internet, and came up with a wealth of information. I passed some of this information along to our family doctor who seemed almost as unfamiliar with the term as I was. I gave him some information I had copied from the Mayo Clinic and The LBDA and he was happy to take them.
The best advocate for your loved one is YOU. Your are the boss and the health care professionals are a part of the team. Educate yourself. If you feel that there has not been a proper diagnoses than you need to advocate for more tests
While I highly respect the staff at the Extendicare from the laundry to the manager. I am the boss in terms of my husband's care and I don't say that disrespectfully and neither do I abuse my boundaries.
Arm yourself with knowledge for KNOWLEDGE IS POWER.
Saturday, 5 September 2015
LIKE A THEIF IN THE NIGHT
My husband Steve could sing the" Lord's Prayer" like no one else I know and give the benediction: "The Lord bless you and keep you; the Lord make His face shine upon you, and be gracious to you; the LORD lift up His countenance upon you, and give you peace" (Numbers 6:24-26 NKJV)
I recall a member of the congregation saying to me, "When the pastor walks out on stage, he brings such a sense of peace with him that all my anxieties seem to go away." That observation of him articulated the kind of individual Steve was. Without a doubt his life's purpose was fulfilled in helping people find peace with themselves, with others and with God.
Then we were visited by a subtle, invisible presence called Lewy Body dementia (LBD). He was having difficulty reading scripture, and forgetting things.
His physician labeled these incidents as symptoms of burnout. After all, public service is one of the higher stress-related careers.
Our invisible intruder continued to take away more of Steve's ability to function, and he started to lose interest in his work. In 1995 at the age of 49 he was forced to resign his pastoral position and took a year off.
As a result, in 1996 we made a move across the country to pastor a smaller congregation. This in itself should make things easier. Not long into the first six months, I knew we were facing some major challenges.
These challenges resulted in more tests, Ct scans showing scar tissue, evidence of mini-strokes.
In 1998 the storm continued to increase and at the end of that year he packed up his books for the last time.
It took six more years of CT scans, MRI's and cognitive testing to come up with a diagnosis. They were years filled with denial, frustration, self-pity and fear. When the neurologist informed us that the closest diagnosis he could come up with was a neurological disease known as Lewy body dementia, my reaction was silence. I had no idea what he was talking about.
The content of this blog is taken from an article I wrote for the Sept/Oct issue of the Testimony Magazine. It contains a paragraph explaining Lewy Body Dementia. I will not repeat this section in my blog as I have already done so in previous blogs.
LBD showed up like a thief in the night. It slowly peeled away Steve's independence. It robbed him of his life's calling and sense of self-worth. He lost his ability to dial a number or use his bank card. His driver's licence was taken away. One of the greatest losses was his music. Steve was known for his outstanding musical talent and played for conferences all across Canada.
Now it is a special occasion when I begin to quote a Scripture and he can finish it. For several years we did this. I would say; "And we know"....and he would continue,"...that all things work together for good." But as time goes on, his memory is becoming more and more distorted.
Changes in life are inevitable. Tomorrow is promised to no one. Every day is precious. Joy comes from living in the moment, with thanksgiving for God's abundant grace and love.
Taken from page 15 of the Sept/Oct issue of the Testimony Magazine, the official publication of the Pentecostal Assemblies of Canada.
My journey of these events has been published in my book "WHEN TROUBLES FALL LIKE LEMON DROPS, which can be obtained from my website; www.whentroublesfalllikelemondrops.weebly.com.
I recall a member of the congregation saying to me, "When the pastor walks out on stage, he brings such a sense of peace with him that all my anxieties seem to go away." That observation of him articulated the kind of individual Steve was. Without a doubt his life's purpose was fulfilled in helping people find peace with themselves, with others and with God.
Then we were visited by a subtle, invisible presence called Lewy Body dementia (LBD). He was having difficulty reading scripture, and forgetting things.
His physician labeled these incidents as symptoms of burnout. After all, public service is one of the higher stress-related careers.
Our invisible intruder continued to take away more of Steve's ability to function, and he started to lose interest in his work. In 1995 at the age of 49 he was forced to resign his pastoral position and took a year off.
As a result, in 1996 we made a move across the country to pastor a smaller congregation. This in itself should make things easier. Not long into the first six months, I knew we were facing some major challenges.
These challenges resulted in more tests, Ct scans showing scar tissue, evidence of mini-strokes.
In 1998 the storm continued to increase and at the end of that year he packed up his books for the last time.
It took six more years of CT scans, MRI's and cognitive testing to come up with a diagnosis. They were years filled with denial, frustration, self-pity and fear. When the neurologist informed us that the closest diagnosis he could come up with was a neurological disease known as Lewy body dementia, my reaction was silence. I had no idea what he was talking about.
The content of this blog is taken from an article I wrote for the Sept/Oct issue of the Testimony Magazine. It contains a paragraph explaining Lewy Body Dementia. I will not repeat this section in my blog as I have already done so in previous blogs.
LBD showed up like a thief in the night. It slowly peeled away Steve's independence. It robbed him of his life's calling and sense of self-worth. He lost his ability to dial a number or use his bank card. His driver's licence was taken away. One of the greatest losses was his music. Steve was known for his outstanding musical talent and played for conferences all across Canada.
Now it is a special occasion when I begin to quote a Scripture and he can finish it. For several years we did this. I would say; "And we know"....and he would continue,"...that all things work together for good." But as time goes on, his memory is becoming more and more distorted.
Changes in life are inevitable. Tomorrow is promised to no one. Every day is precious. Joy comes from living in the moment, with thanksgiving for God's abundant grace and love.
Taken from page 15 of the Sept/Oct issue of the Testimony Magazine, the official publication of the Pentecostal Assemblies of Canada.
My journey of these events has been published in my book "WHEN TROUBLES FALL LIKE LEMON DROPS, which can be obtained from my website; www.whentroublesfalllikelemondrops.weebly.com.
Monday, 3 August 2015
GRANDFATHER'S TABLE
This is a story which my husband used as an illustration in one of his sermons some twenty-five years ago. His sermon was based on the theme 'In as much as these'.
Today my husband sits at a feeding table and this story often comes to my mind as I gently help him direct is feeding utensils to his mouth which for the most part is a real challenge.
AGED GRANDFATHER WHOSE SHAKING HANDS CAUSE HIM TO DROP THINGS IS BANASHED FROM THE FAMILY TABLE TO EAT FROM A WOODEN BOWL.
A frail old man went to live with his son, and daughter-in-law, and four year old grand-son.
The old man's hands trembled, his eyesight was blurred, and his step faltered. The family ate together at the table.
But the elderly grandfather's shaky hands and failing sight made eating difficult. Peas rolled off his spoon unto the floor. When he grasped the glass, milks spilled on the tablecloth. The son and the daughter-in-law became irritated with the mess.
"We must do something about Grandfather." said the son; "I've had enough of his spilled milk, noisy eating, and food on the floor."
So the husband and wife set a small table in the corner.
There, Grandfather ate alone while the rest of the family enjoyed the dinner. Since Grandfather had broken a dish or two, his food was served in a wooden bowl.
When the family glanced in Grandfather's direction, sometimes he had a tear or two in his eye as he sat alone.
Still the only words the couple had for him were sharp admonitions when he dropped a fork or spilled food.
The four year old watched in silence. One evening before supper, the father noticed his son playing with wood scraps on the floor. He asked the child sweetly , "What are you doing?"
Just as sweetly, the boy responded, "Oh I am making a little bowl for you and Mama to eat your food when you grow up."
The four year old smiled and went back to work.
The words so struck the parents that they were speechless. Then tears started to stream down their cheeks. Though no word was spoken, both knew what must be done.
That evening the husband took Grandfather's hand and gently led him back to the family table. For the remainder of his days he ate with the family.
And for some reason, neither husband nor wife seemed to care any longer when a fork was dropped, milk spilled, or the tablecloth got soiled.
....A child shall lead them.
Today my husband sits at a feeding table and this story often comes to my mind as I gently help him direct is feeding utensils to his mouth which for the most part is a real challenge.
AGED GRANDFATHER WHOSE SHAKING HANDS CAUSE HIM TO DROP THINGS IS BANASHED FROM THE FAMILY TABLE TO EAT FROM A WOODEN BOWL.
A frail old man went to live with his son, and daughter-in-law, and four year old grand-son.
The old man's hands trembled, his eyesight was blurred, and his step faltered. The family ate together at the table.
But the elderly grandfather's shaky hands and failing sight made eating difficult. Peas rolled off his spoon unto the floor. When he grasped the glass, milks spilled on the tablecloth. The son and the daughter-in-law became irritated with the mess.
"We must do something about Grandfather." said the son; "I've had enough of his spilled milk, noisy eating, and food on the floor."
So the husband and wife set a small table in the corner.
There, Grandfather ate alone while the rest of the family enjoyed the dinner. Since Grandfather had broken a dish or two, his food was served in a wooden bowl.
When the family glanced in Grandfather's direction, sometimes he had a tear or two in his eye as he sat alone.
Still the only words the couple had for him were sharp admonitions when he dropped a fork or spilled food.
The four year old watched in silence. One evening before supper, the father noticed his son playing with wood scraps on the floor. He asked the child sweetly , "What are you doing?"
Just as sweetly, the boy responded, "Oh I am making a little bowl for you and Mama to eat your food when you grow up."
The four year old smiled and went back to work.
The words so struck the parents that they were speechless. Then tears started to stream down their cheeks. Though no word was spoken, both knew what must be done.
That evening the husband took Grandfather's hand and gently led him back to the family table. For the remainder of his days he ate with the family.
And for some reason, neither husband nor wife seemed to care any longer when a fork was dropped, milk spilled, or the tablecloth got soiled.
....A child shall lead them.
Saturday, 4 July 2015
The Emotional Roller Coaster
There are some very good articles written on dealing with dementia. For the most part they expose the part of the caregiver's role that is very much under control. They may voice that there are times of frustrations but very seldom expose to the reader just what those frustrations are.
In my book,' When Troubles Fall Like Lemon Drops,' I talk about the emotional roller coaster that one experiences. The seasons of life that one is experiencing at the time will ultimately determine the challenges that one is faced with, A family with young teenage children, whose loved one has been smitten with this devastating disease, will encounter losses that are quite different from those who are affected later in life.
Here are a few of my confessions, taken from the chapter The Emotional Roller Coaster, page 56.
These are excerpts from my journal 2005-2013
...I am angry and resentful today, and very self-centred,. It is not only his life that is put on hold but mine as well. My kids don't have a father, I don't have a husband. I sometimes vent this in little innuendoes to him, I know it is not right but nothing is right.
...I will not confess, in writing, my thoughts and anxieties today. They are very real at this time. I suppose everyone has a chapter in their story that they would not revel.
...It's the long weekend. I feel selfish today. Would love to go away for the weekend, take long walks, have a good conversation, have a picnic, enjoy company, someone to take care of me, drive the car, get the gas, take out the luggage etc. etc. etc. OK Ruth, you know the difference between wishful thinking. For the moment it is pleasing to imagine.
The transition from being a wife to a caregiver does not come easily. We must remember that we are all on the same journey to our final destination and there are different roles for different times. Sometimes when the role changes at a young age it can be more challenging.
For more information on my book go to www.whentroublesfalllikelemondrops.com
There are some very good articles written on dealing with dementia. For the most part they expose the part of the caregiver's role that is very much under control. They may voice that there are times of frustrations but very seldom expose to the reader just what those frustrations are.
In my book,' When Troubles Fall Like Lemon Drops,' I talk about the emotional roller coaster that one experiences. The seasons of life that one is experiencing at the time will ultimately determine the challenges that one is faced with, A family with young teenage children, whose loved one has been smitten with this devastating disease, will encounter losses that are quite different from those who are affected later in life.
Here are a few of my confessions, taken from the chapter The Emotional Roller Coaster, page 56.
These are excerpts from my journal 2005-2013
...I am angry and resentful today, and very self-centred,. It is not only his life that is put on hold but mine as well. My kids don't have a father, I don't have a husband. I sometimes vent this in little innuendoes to him, I know it is not right but nothing is right.
...I will not confess, in writing, my thoughts and anxieties today. They are very real at this time. I suppose everyone has a chapter in their story that they would not revel.
...It's the long weekend. I feel selfish today. Would love to go away for the weekend, take long walks, have a good conversation, have a picnic, enjoy company, someone to take care of me, drive the car, get the gas, take out the luggage etc. etc. etc. OK Ruth, you know the difference between wishful thinking. For the moment it is pleasing to imagine.
The transition from being a wife to a caregiver does not come easily. We must remember that we are all on the same journey to our final destination and there are different roles for different times. Sometimes when the role changes at a young age it can be more challenging.
For more information on my book go to www.whentroublesfalllikelemondrops.com
Monday, 29 June 2015
A PLATTER OF ENCOURAGEMENT IN THE LEAST LIKELY PLACE
I am blessed to be a Distributor of Encouragement. Our steps are ordered of the Lord and He directs our paths, even to the bank teller you are destined to go to.
Today I was encouraged by a lady at the Bank who has been a diabetic since birth. She was diagnosed at eighteen months. She has lost a kidney and a leg as a result of the illness.
Through the process of the transactions, she became aware that I had written a book and we discussed the title and reason for writing.
She began to thank me for being a caregiver and how much she appreciated her husband, and what he has gone through over the years. It isn't uncommon for her to pass out; have to be taken to emergency and wake up with no knowledge as to what has happened. She states, her husband goes through more pain than she does, as she has come to terms with her illness and takes one day at a time. She continued the conversation with more emphasis on the caregiver.
We ended the conversation by me saying; "Thank you for sharing your story." "O no," she replied, "thank you for being the caregiver."
I was reminded of the verse in 11Cor 1:3-4(MSG)
All praise to the God and Father of our Master, Jesus the Messiah! God of all healing counsel! He comes alongside us when we go through hard times, and before you know it he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us.
Today was different. I was the recipient.
Today I was encouraged by a lady at the Bank who has been a diabetic since birth. She was diagnosed at eighteen months. She has lost a kidney and a leg as a result of the illness.
Through the process of the transactions, she became aware that I had written a book and we discussed the title and reason for writing.
She began to thank me for being a caregiver and how much she appreciated her husband, and what he has gone through over the years. It isn't uncommon for her to pass out; have to be taken to emergency and wake up with no knowledge as to what has happened. She states, her husband goes through more pain than she does, as she has come to terms with her illness and takes one day at a time. She continued the conversation with more emphasis on the caregiver.
We ended the conversation by me saying; "Thank you for sharing your story." "O no," she replied, "thank you for being the caregiver."
I was reminded of the verse in 11Cor 1:3-4(MSG)
All praise to the God and Father of our Master, Jesus the Messiah! God of all healing counsel! He comes alongside us when we go through hard times, and before you know it he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us.
Today was different. I was the recipient.
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