Another Year Another Christmas

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.'

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!!

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.

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.

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.

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

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.

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"

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.

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.

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."

Who is Lewy?

The majority of dementia diseases are pretty much lumped together under the umbrella of Alzheimer's dementia. When Steve first began signs of deteriorating mental functions we were told it is white matter disease, mini strokes, oxygen not getting to the brain etc. It took six years for us to get any kind of diagnoses as to what was really happening. In the meantime I would get questions like; 'how is your husband, does he still know who you are?'

When the neurologists called and informed me that he had a dementia labeled Lewy Body Dementia, my first response was 'what is that'? At the time many health care professionals knew very little or nothing about the disease and gave me a blank stare.

My only resource and basically still is the internet. I am thankful to be able to share with other bloggers who are going through similar experiences.

LBD is a common cause of memory, motor emotional and behavioural disturbance and is the second leading cause of dementia. Because it has similar symptoms to Parkinson's and Alzheimer's, it is difficult to diagnose.

Lack of information can have devastating consequences on the patient, their family and even healthcare providers. The patient himself is misunderstood; the family is totally shattered, and giving the wrong kind of medication can be fatal.

Lewy Bodies are abnormal structures in the brain; microscopic protein deposits found in nerve cells in regions of the brain involved in thinking, memory and movement which causes the brain to slowly deteriorate. They were first discovered in 1912 by Frederick Lewy, a colleague of Alois Alzheimer,for whom Alzheimer's disease is named.

For more information on the subject go to www.lbda.org.

My next post will give some comparisons between Lewy Body Dementia and Alzheimer's disease.

I am not an expert on the disease and my future posts will be more to do with the every day living and coping with the disease.

Dealing with Guilt followed by Commitment

After Steve's diagnoses and a better understanding of the disease. The journey of acceptance began to evolve. I say evolve as for us it didn't come over night. Acceptance will often trigger guilt.  Why didn't I understand, why didn't I know?
GUILT is anger directed at ourselves. It's about what we didn't do or should have done.  We want to condemn ourselves.  It can be a good reminder, at times, of our messing up but we must never let the fruit of the tree of good and evil keep us exposed to our misgivings.
COMMITMENT It's an act, not a word, in difficult times and challenging adversity. It is during times of distressing situations that we really learn who the other person is and who we really are ourselves. It is at times like this when we come to love the person for him or herself and not just for the feelings and experience they give us.

Processing the Process through Denial

A proper diagnoses is so important with any disease. I had no idea what I was dealing with when my husband was diagnosed with Lewy Body Dementia, however at least I had a label that I could do some research on. Understanding the disease helped ease tensions. We were able to sit down together as a family and discuss and come to some understanding of what was happening. The website www.LBD.org became my lifeline.

Acceptance doe not mean running away from the struggle; it means accepting it as it comes with all the handicaps, suffering, complexities of life and its injustice.

These excerpts are taken from my book "When Troubles Fall Like Lemon Drops" which will be published shortly.

Next we will talk about the Guilt and Commitment that followed me after the Acceptance.

My first response to this journey was denial. DENIAL There was my own personal denial of my husband Steve's condition.He was just having burnout and we were going to fix it. This being disorientated and forgetting things is something we all experience.Missing appointments, not being able to focus on reading his notes became a little more concerning. So we will fix this with B12, DHA, Q10 Gingo Biloba or anything that can feed the brain. Steve was in denial so any form of confrontation was unresponsive. There was my own personal denial of myself. Mental and neurological illness carries a huge stigma. While I was showing to the world that I was very much in control, I was battling my own personal demons of self-acceptance, regret, loss of control and worthlessness. After all this whatever is happening is affecting not only Steve but the entire family. ANGER What was taking place was not just happening to Steve it was happening to me and why? He seemed to be functioning on so many levels. He sleeps, eats, manages himself somewhat independently but can't or won't carry on an intelligent conversation. He hardly recognises I am in the room. My anger affliction was damaging and contagious. It began to affect our children. SELF-PITY Self-pity really stinks if you sit to long on your pity pot. I'm deprived of friendships, a husband, relationship, intimacy. I have no one to help me with anything. You can so easily get caught up in self-pity that you can convince yourself that the problem is not the person who is ill, since all you see is your own problem. ...Journey to be continued.

It is 6:25 AM Canada Day July 1 2009
I roll over in bed and feel the urge to go to the bathroom. I hear shuffling in the kitchen and a snap sizzling sound.
It's my husband opening a can of diet coke. Good Lord, a diet coke at 6:30AM!! Then I say to myself, his pleasures are limited so enjoy.

Life has changed considerably for us over the past ten years. Six of those years, going to doctors, specialists, MRI's, Cat scans neurological testing, vague diagnosis such as, white matter disease, TIA's, frontal lobe etc.

Then a phone call came from our neurologist, "Your husband has Lewy Body Dementia." What is that was my response. Life had already made some drastic changes for us as it was.

The long journey entailed many changes, losses, and readjustments. At least now we could research and try and come to some kind of understanding about what was happening to a loved one that is slowly fading away.

The journey has resulted in recording my journal in my book which has just gone to print.' When Troubles Fall Like Lemon Drops.' Encountering Lewy Body Dementia' and rebuilding our lives as a family.

We will continue this journey in my next blog.