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.
Monday, 3 August 2015
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.
Sunday, 14 June 2015
Dealing With Loss
LOSSES
Where does one begin when it comes to dealing with loss for one who suffers any king of illness. Losses with those dealing with dementia is a traumatic experience for everyone.
Regardless of how we deal with loss, to lose our independence alters out lives forever.
Loss of Employment
My husband's first great loss was his life's work. He was not functioning well enough to keep his job long before we actually knew what was happening to him. To go to the office and pack up his books for the last time marked the end of an era that came far too soon.
Loss of Self-Worth
There is nothing that can affect a person's self-worth like not being able to provide for himself or his family. Steve began to verbalize his sense of self-worthlessness. It was difficult for our family as well as our personal world lacked the knowledge of the deep inner turmoil which was stirring up a storm around us
Loss of Control
Loosing your ability to use your bank card, misdialing numbers, and knowing you are loosing these abilities. He was so aware of what he should be doing but his brain could not handle all the tasks.
Loss of Identity
While our loss of identity is very much related to our career, it affects who we really are as a person and how people relate to us. This is even more visible in one who suffers with dementia.
Loss of Musical Talent
For my husband this was his trade mark. It was part of his identity. He played in auditoriums across Canada for his church denomination. Today he very seldom can even tap his feet to music. Lewy has taken his ear for music, his reflexes and coordination and locked them away.
Loss of Social Contact
Talk to any caregiver whose loved one has been intruded on with this terrible disease and ask about their social life. Friends for some reason disappear. Even with all the education and exposure to the disease, for the most part, people do not know how to cope. If you have one couple or person who will be there for you, let you vent without judging you are blessed.
Loss of Drivers Licence
It came over time. First it was driveable and restricted licence. Then came the big blow. It was the lady at the licence registration that took his licence away. He is not one to hold a grudge but he came close on this occasion.
"We never know what we have until it is lost"
Where does one begin when it comes to dealing with loss for one who suffers any king of illness. Losses with those dealing with dementia is a traumatic experience for everyone.
Regardless of how we deal with loss, to lose our independence alters out lives forever.
Loss of Employment
My husband's first great loss was his life's work. He was not functioning well enough to keep his job long before we actually knew what was happening to him. To go to the office and pack up his books for the last time marked the end of an era that came far too soon.
Loss of Self-Worth
There is nothing that can affect a person's self-worth like not being able to provide for himself or his family. Steve began to verbalize his sense of self-worthlessness. It was difficult for our family as well as our personal world lacked the knowledge of the deep inner turmoil which was stirring up a storm around us
Loss of Control
Loosing your ability to use your bank card, misdialing numbers, and knowing you are loosing these abilities. He was so aware of what he should be doing but his brain could not handle all the tasks.
Loss of Identity
While our loss of identity is very much related to our career, it affects who we really are as a person and how people relate to us. This is even more visible in one who suffers with dementia.
Loss of Musical Talent
For my husband this was his trade mark. It was part of his identity. He played in auditoriums across Canada for his church denomination. Today he very seldom can even tap his feet to music. Lewy has taken his ear for music, his reflexes and coordination and locked them away.
Loss of Social Contact
Talk to any caregiver whose loved one has been intruded on with this terrible disease and ask about their social life. Friends for some reason disappear. Even with all the education and exposure to the disease, for the most part, people do not know how to cope. If you have one couple or person who will be there for you, let you vent without judging you are blessed.
Loss of Drivers Licence
It came over time. First it was driveable and restricted licence. Then came the big blow. It was the lady at the licence registration that took his licence away. He is not one to hold a grudge but he came close on this occasion.
"We never know what we have until it is lost"
Sunday, 31 May 2015
You are your Loved Ones Advocate
While institutions have policies and procedures in place, those in management positions responsible to see that these are followed through, are quite often too busy being buried in bureaucratic paper work.
All required needs including dietary, hygiene, personal care; exercise and recreation etc., are laid out in policies in your home Province/State. Continuing Care and Accommodation Standards are available on line on the Alberta Health Services website.
While there are routines in place from toileting, to movement, hydration etc., there are times due to shortage of staff that these routines can be overlooked.
No matter how well an institution is run, there will always be oversights, and sadly this affects those who have no voice as they cannot speak for themselves and are left to suffer abandonment.
My husband has no voice. He is limited to how much he can express his needs. I am his voice. He may not be able to express himself but he knows full well what is being said and how he is being treated. I have had to personally demand respect and treatment with dignity for Steve and remind the staff by way of management through writing my concerns.
If you have concerns about your loved ones care, go to your Province/State website. Read the standards especially the Accommodation and Continuing care Standards. For example it will tell you how many baths they are required to get per week.
It is also good practice to not always show up at the same time every day or when you visit. This has been very helpful to me in terms of being more aware of the nature of care my husband is getting.
While Steve is limited in expressing himself and his needs, it is very obvious which Health Care Aids he takes a special liking to. The tone of voice, the gentle touch, the respect, goes a long way in helping our most vulnerable.
If you want to comfort the afflicted, sometimes you have to afflict the comfortable.
All required needs including dietary, hygiene, personal care; exercise and recreation etc., are laid out in policies in your home Province/State. Continuing Care and Accommodation Standards are available on line on the Alberta Health Services website.
While there are routines in place from toileting, to movement, hydration etc., there are times due to shortage of staff that these routines can be overlooked.
No matter how well an institution is run, there will always be oversights, and sadly this affects those who have no voice as they cannot speak for themselves and are left to suffer abandonment.
My husband has no voice. He is limited to how much he can express his needs. I am his voice. He may not be able to express himself but he knows full well what is being said and how he is being treated. I have had to personally demand respect and treatment with dignity for Steve and remind the staff by way of management through writing my concerns.
If you have concerns about your loved ones care, go to your Province/State website. Read the standards especially the Accommodation and Continuing care Standards. For example it will tell you how many baths they are required to get per week.
It is also good practice to not always show up at the same time every day or when you visit. This has been very helpful to me in terms of being more aware of the nature of care my husband is getting.
While Steve is limited in expressing himself and his needs, it is very obvious which Health Care Aids he takes a special liking to. The tone of voice, the gentle touch, the respect, goes a long way in helping our most vulnerable.
If you want to comfort the afflicted, sometimes you have to afflict the comfortable.
Sunday, 17 May 2015
Dance Night
It's Dance Night every Friday at the Extendicare. The tables are moved to one side. The residents are arriving to form a circle, the majority in wheelchair's or walkers. The musicians are arriving. It can be anything from a band of eight or ten to a one man show.
The music begins to play all the old tunes. Feet began to tap and hands began to wave to the rhythm of the music. The volunteers get the wheelchairs out and it becomes quite a jovial site. Hands are going, big smiles are forming on their faces as they get swept across the floor.
My husband Steve was an accomplished musician. He could raise the standard of any vocalist with his piano playing. Lewy has stolen the majority of that special gift and has carried it off to some seclusive area of the brain. He has left enough for Steve's ear to pick up tunes but has robbed him completely of rhythm.
Tonight is a little special. Without any prompting, he takes my hand and starts to sway with the rhythm of the music. It's an amazing special moment and as quickly as it came it went away. Lewy does things like that. Until you become familiar with his meddling your hopes may be kindled to expect gradual improvements. You soon learn to enjoy that sentence that came with clarity, or a compliment such as; "I like your hair."
Tomorrow is another day with limited expectations.
The music begins to play all the old tunes. Feet began to tap and hands began to wave to the rhythm of the music. The volunteers get the wheelchairs out and it becomes quite a jovial site. Hands are going, big smiles are forming on their faces as they get swept across the floor.
My husband Steve was an accomplished musician. He could raise the standard of any vocalist with his piano playing. Lewy has stolen the majority of that special gift and has carried it off to some seclusive area of the brain. He has left enough for Steve's ear to pick up tunes but has robbed him completely of rhythm.
Tonight is a little special. Without any prompting, he takes my hand and starts to sway with the rhythm of the music. It's an amazing special moment and as quickly as it came it went away. Lewy does things like that. Until you become familiar with his meddling your hopes may be kindled to expect gradual improvements. You soon learn to enjoy that sentence that came with clarity, or a compliment such as; "I like your hair."
Tomorrow is another day with limited expectations.
Monday, 11 May 2015
Lewy Body Dementia and Alzheimer's
While there are significant similarities to Alzheimer's dementia, LBD shows completely different symptoms. The symptoms vary from one patient to another; however there are certain core features that are very similar. I will emphasise those that are more related to what I see in my husband Steve.
LBD patients are more prone to visual hallucinations than in Alzheimer's patients. For Steve, hallucinations are rare, however he cannot communicate so it remains to be seen what is really going on inside. When he could communicate his hallucinations were more like an incident that took place but not just in the way he described it. For example; he was telling me one day that he was talking to the Mayor of the city of Calgary. After probing into the conversation I understood that he listened to the Mayor talk on TV.
LBD patients have sleep behavior disorder, talking in sleep, violent movements, falling out of bed. This was quite frequent when Steve was at home. We had moved to separate bedrooms due to my inability to sleep, which I needed having to go to work the next day. One morning I found him flat out on the floor, after which a bed rail was installed.
LBD patients have significant sensitivity to Antipsychotic medication. According to the LBD Association, 50% of patients with LBD who are treated with Antipsychotic medication may experience severe neuroleptic sensitivity leading to worsening symptoms. Steve could not tolerate the drugs that were available back then. There are some better treatments available at the present time.
Alzheimer's patients are not nearly as prone to developing extreme sensitivity to these drugs.
LBD patients have more of a fluctuating cognition than Alzheimer's. Steve has adverse fluctuations. He has never not known who I am, however there are some days when all I get is a blank stare. He knows the family when he sees their pictures but has trouble saying their names. The other day I was teasing him; 'Your my little poochy.' No, he says 'Your my poochy', so I say,' then your my pain in the butt.' He says, 'yes'. I say,' O no your not.' He says' theoretically I am.' And I'm thinking where did that come from? I may not get another word I understand other than ,yes, no, ok and good for sometime to come.
Steve has severe Parkinsonism. He is totally immobile, yet has significant strength in his hands.
" Never take for granted what your loved knows or understands regarding his/her surroundings. Treat them with dignity, respect and unconditional love."
LBD patients are more prone to visual hallucinations than in Alzheimer's patients. For Steve, hallucinations are rare, however he cannot communicate so it remains to be seen what is really going on inside. When he could communicate his hallucinations were more like an incident that took place but not just in the way he described it. For example; he was telling me one day that he was talking to the Mayor of the city of Calgary. After probing into the conversation I understood that he listened to the Mayor talk on TV.
LBD patients have sleep behavior disorder, talking in sleep, violent movements, falling out of bed. This was quite frequent when Steve was at home. We had moved to separate bedrooms due to my inability to sleep, which I needed having to go to work the next day. One morning I found him flat out on the floor, after which a bed rail was installed.
LBD patients have significant sensitivity to Antipsychotic medication. According to the LBD Association, 50% of patients with LBD who are treated with Antipsychotic medication may experience severe neuroleptic sensitivity leading to worsening symptoms. Steve could not tolerate the drugs that were available back then. There are some better treatments available at the present time.
Alzheimer's patients are not nearly as prone to developing extreme sensitivity to these drugs.
LBD patients have more of a fluctuating cognition than Alzheimer's. Steve has adverse fluctuations. He has never not known who I am, however there are some days when all I get is a blank stare. He knows the family when he sees their pictures but has trouble saying their names. The other day I was teasing him; 'Your my little poochy.' No, he says 'Your my poochy', so I say,' then your my pain in the butt.' He says, 'yes'. I say,' O no your not.' He says' theoretically I am.' And I'm thinking where did that come from? I may not get another word I understand other than ,yes, no, ok and good for sometime to come.
Steve has severe Parkinsonism. He is totally immobile, yet has significant strength in his hands.
" Never take for granted what your loved knows or understands regarding his/her surroundings. Treat them with dignity, respect and unconditional love."
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