I wasn't told ahead of time that I would need a degree in psychiatry to lovingly give care to a family member with Alzheimer's. We appear to be living in an insane asylum these days. Nothing is as it should be. Communication is nonsensical and garbled much of the time. In spite of telling each other over and over again that it is completely ridiculous, my husband and I still catch ourselves expecting Papa to 'make sense'.
After several consecutive nights of very interrupted sleep, I feel as if I'm needing a psychiatric treatment. By 6 a.m. this morning I was fed up with redirecting Papa out of closets, away from the windows, and back into bed. Enough is enough!
I got his bath ready, then his breakfast, and by 8 a.m. we were in the car to go 'somewhere'. It had snowed overnight. The roads were slippery and clogged with morning rush hour drivers who would have cursed me had they known I was merely taking up valuable road space for recreational purposes.
We drove around for the next 2 hours, somewhat aimlessly. Papa is calm and stationary while in the car. Sometimes he comments about the snow or the traffic. Mostly he sleeps slumped over beside me.
Fighting the insanity on the roads was easier than fighting the insanity in our home.
After the caregiver arrived, I was able to shower and rest for a while. Now, feeling somewhat refreshed, I'll go do something creative to renew my spirit.
Thank you, Lord, for the wonderful caregivers who bless us with lovingly spending time with Papa so we can regain a measure of mental and emotional stability.
Tuesday, February 24, 2009
Monday, February 23, 2009
AARRRGGHHHHHH
I just got off the treadmill. I don't often walk on it but I needed to diffuse my anger and thought walking, fast, might be a better option than pounding walls.
Papa incessantly asks for someone to take him home. My patience is exhausted with this concept. He is at home. He has lived here for 4.5 years. His room is as it was when he first moved in. We have not moved furniture. Where is 'home' if this is not it? What is he looking for that we are not providing? If only he could communicate what's on his heart. His speech has been very incoherent and largely unintelligible tonight.
Lord, have mercy. Deliver us all from this insanity.
Papa incessantly asks for someone to take him home. My patience is exhausted with this concept. He is at home. He has lived here for 4.5 years. His room is as it was when he first moved in. We have not moved furniture. Where is 'home' if this is not it? What is he looking for that we are not providing? If only he could communicate what's on his heart. His speech has been very incoherent and largely unintelligible tonight.
Lord, have mercy. Deliver us all from this insanity.
Thursday, February 19, 2009
Mixed Emotions
On Monday, Feb. 16/09, early evening, Stan and I planned to leave on a respite week. He and Papa picked up his sister, Lois, from the airport at suppertime. She would be staying at our home to care for Papa and allow me some time to rejuvenate. Lois does this several times throughout the year and I could not survive without her gracious assistance.
While we stood at the front door saying goodbye, Papa rose from his chair and headed for the closet to get his coat. We immediately knew he was planning to join us. I carefully attempted to explain that he would be staying here, in his home, and his daughter, Lois (whom we introduced several times) would be caring for him. He was unconvinced and undeterred.
Stan took off his coat and coaxed Papa to his bedroom. Both he and Lois attempted to convince him it was bedtime, this was his bedroom and he should start getting ready for bed. The bed covers were turned back and the pj's were placed on the bed beside him. He sat there still unconvinced.
After much prodding, assisting with clothing and the regular bedtime routine, Stan left Lois to finish the process so we could escape without more complications. We learned later that Papa was up no less than 7 times throughout that night.
My mixed emotions are: relieved to get away for a short while but badly that someone else has to deal with all the nonsense; and silently grieving at the confusion that plagues Papa.
While we stood at the front door saying goodbye, Papa rose from his chair and headed for the closet to get his coat. We immediately knew he was planning to join us. I carefully attempted to explain that he would be staying here, in his home, and his daughter, Lois (whom we introduced several times) would be caring for him. He was unconvinced and undeterred.
Stan took off his coat and coaxed Papa to his bedroom. Both he and Lois attempted to convince him it was bedtime, this was his bedroom and he should start getting ready for bed. The bed covers were turned back and the pj's were placed on the bed beside him. He sat there still unconvinced.
After much prodding, assisting with clothing and the regular bedtime routine, Stan left Lois to finish the process so we could escape without more complications. We learned later that Papa was up no less than 7 times throughout that night.
My mixed emotions are: relieved to get away for a short while but badly that someone else has to deal with all the nonsense; and silently grieving at the confusion that plagues Papa.
Monday, February 16, 2009
Papa, It's Cold Out There!
Morning Feb 16/09:
Papa is napping in his chair and suddenly gets up intent to go somewhere. I am sitting nearby and inquire, "Where are you going."
He replies, "I don't know."
"If you don't know where you are going then perhaps you shouldn't go." I said.
He continued on to the front door determined to go 'somewhere'. It was locked and he struggled a bit to open it, eventually succeeding. I watched in silence as he proceeded out the door, without a coat, being sure he would promptly return due to the below freezing temperature.
Stan came upon this scene and saw him maneuvering down the stairs and around the front corner of the house. "What's going on?" he asked.
I filled him in saying, "He'll be right back as soon as the cold sinks in." I was unconcerned, and very wrong.
Stan dashed out the door and found him standing by the car, apparently waiting to get in and go somewhere.
Stories of people wandering off, confused, bewildered, and completely oblivious to the weather conditions, are not uncommon. How quickly this can happen. How easy for someone to slip away undetected and disappear.
I would not have left him long had he not returned, but even then, would I have known if he wandered down the street or to the back of the house, and if I went one way and he was the other, how long till he would have been rescued? Yet another wake up call for me. We must be ever vigilant, present, and proactive.
Papa is napping in his chair and suddenly gets up intent to go somewhere. I am sitting nearby and inquire, "Where are you going."
He replies, "I don't know."
"If you don't know where you are going then perhaps you shouldn't go." I said.
He continued on to the front door determined to go 'somewhere'. It was locked and he struggled a bit to open it, eventually succeeding. I watched in silence as he proceeded out the door, without a coat, being sure he would promptly return due to the below freezing temperature.
Stan came upon this scene and saw him maneuvering down the stairs and around the front corner of the house. "What's going on?" he asked.
I filled him in saying, "He'll be right back as soon as the cold sinks in." I was unconcerned, and very wrong.
Stan dashed out the door and found him standing by the car, apparently waiting to get in and go somewhere.
Stories of people wandering off, confused, bewildered, and completely oblivious to the weather conditions, are not uncommon. How quickly this can happen. How easy for someone to slip away undetected and disappear.
I would not have left him long had he not returned, but even then, would I have known if he wandered down the street or to the back of the house, and if I went one way and he was the other, how long till he would have been rescued? Yet another wake up call for me. We must be ever vigilant, present, and proactive.
Friday, February 13, 2009
The Bigger Picture
So often we ask 'why'. Why does God keep Papa alive when there seems little quality of life left for him? We have learned over the years that 'why' is the wrong question.
Just read the Book of Job (Bible) sometime. Life dealt him a very hard blow, many times over, and in the end God revealed that there indeed was a much bigger story taking place. And, God indicated in no uncertain terms that He is sovereign. He knows what He is doing on earth, to us and through us. There is a purpose.
I am reminded of the many times I have sung songs like:
"Take my life and let it be, consecrated Lord to thee. "
or
"You are the Potter, I am the clay.
Mold me and make me after Thy will
While I am waiting, yielded and still."
Often we sing these songs of consecration, sometimes glibly, just mouthing words, and other times with feeling and devotion. Then, when God begins to 'mold' us we cry out in pain and ask, 'why are you doing this to me, Lord?'
I can't help but wonder if Papa is currently an instrument in God's hand, helping Him to mold and shape us to become the people of God that we long to be? After several nights of very interrupted sleep it's difficult not to cry out in pain and ask for some respite in this molding process.
Just read the Book of Job (Bible) sometime. Life dealt him a very hard blow, many times over, and in the end God revealed that there indeed was a much bigger story taking place. And, God indicated in no uncertain terms that He is sovereign. He knows what He is doing on earth, to us and through us. There is a purpose.
I am reminded of the many times I have sung songs like:
"Take my life and let it be, consecrated Lord to thee. "
or
"You are the Potter, I am the clay.
Mold me and make me after Thy will
While I am waiting, yielded and still."
Often we sing these songs of consecration, sometimes glibly, just mouthing words, and other times with feeling and devotion. Then, when God begins to 'mold' us we cry out in pain and ask, 'why are you doing this to me, Lord?'
I can't help but wonder if Papa is currently an instrument in God's hand, helping Him to mold and shape us to become the people of God that we long to be? After several nights of very interrupted sleep it's difficult not to cry out in pain and ask for some respite in this molding process.
Monday, February 09, 2009
When home is NOT home. February 9,2009
Today, as is becoming increasingly the case, we arrived home late afternoon from errands and I said, "We're home now. You can get out of the car." I undo Papa's seat belt and begin to exit the car. Papa does not move. I tell him once again that we are at his house and that he should get out of the car and come inside.
I take stuff into the house, leaving the front door wide open for him, but realize after a short time that he is not coming in. I go to look what could be the hold up and find Papa standing in front of the car, apparently waiting for me. Again I reiterate that we are at home and he should come inside.
He follows me but is unconvinced this is home. We attempt to dialogue, me trying to convince him this is his home and he trying to convince me it is not.
We have learned that taking Papa on a tour of the house and pointing out familiar things to him usually works. Today it did not. He recognized his wedding picture and a very old family picture as well as a little candy basket on his dresser....'just like the ones at his house'.
We have some tea and then he wants to 'go home', becoming mildly agitated that I'm resisting.
He goes to the front closet, puts on his coat and shoes and prepares to leave. I've lost this battle of persuasion.
At times like this we oblige him with a short car ride and then again communicate that "We are home now" upon our return. I decide to take a short grocery shopping trip and purchase a quick fix for supper since I dislike cooking and it was already into the supper hour. Bless the person who created the ready-to-eat BBQ chickens at the super markets!
Upon our return home this time, Papa did not argue the point of being home, perhaps because I had distracted his attention to the concept of supper and he, like many people I know, has a real weakness when it comes to food.
Thankfully we got through this situation without any further challenges. And, to let you all know I'm no angel (contrary to some people's opinion), the frustration level ran pretty high during the failed attempts to convince Papa that he was indeed home. On the way out for our little diverted shopping trip I actually slammed the door. I could justify this action by telling you the door had been broken a few years ago and in order to get a good solid closure it is necessary to slam the door, which in fact is so, but reality is that slamming the door helped me release some of the steam that was building. Even my mild mannered husband has been heard slamming the door to release frustrations with Papa. We'll not be replacing the door as long as it still has a very useful purpose beyond the usual.
I am reminded that scripture says, "in your anger, do not sin" (Ps 4:4, Eph 4:26). The error we often fall into is thinking it wrong to express negative emotion. The sin occurs depending on how we express that emotion not in allowing the emotion.
It was somewhat amusing to hear Papa comment all the way to the grocery store about how the streets and various buildings looked just like the ones where he lived.
I take stuff into the house, leaving the front door wide open for him, but realize after a short time that he is not coming in. I go to look what could be the hold up and find Papa standing in front of the car, apparently waiting for me. Again I reiterate that we are at home and he should come inside.
He follows me but is unconvinced this is home. We attempt to dialogue, me trying to convince him this is his home and he trying to convince me it is not.
We have learned that taking Papa on a tour of the house and pointing out familiar things to him usually works. Today it did not. He recognized his wedding picture and a very old family picture as well as a little candy basket on his dresser....'just like the ones at his house'.
We have some tea and then he wants to 'go home', becoming mildly agitated that I'm resisting.
He goes to the front closet, puts on his coat and shoes and prepares to leave. I've lost this battle of persuasion.
At times like this we oblige him with a short car ride and then again communicate that "We are home now" upon our return. I decide to take a short grocery shopping trip and purchase a quick fix for supper since I dislike cooking and it was already into the supper hour. Bless the person who created the ready-to-eat BBQ chickens at the super markets!
Upon our return home this time, Papa did not argue the point of being home, perhaps because I had distracted his attention to the concept of supper and he, like many people I know, has a real weakness when it comes to food.
Thankfully we got through this situation without any further challenges. And, to let you all know I'm no angel (contrary to some people's opinion), the frustration level ran pretty high during the failed attempts to convince Papa that he was indeed home. On the way out for our little diverted shopping trip I actually slammed the door. I could justify this action by telling you the door had been broken a few years ago and in order to get a good solid closure it is necessary to slam the door, which in fact is so, but reality is that slamming the door helped me release some of the steam that was building. Even my mild mannered husband has been heard slamming the door to release frustrations with Papa. We'll not be replacing the door as long as it still has a very useful purpose beyond the usual.
I am reminded that scripture says, "in your anger, do not sin" (Ps 4:4, Eph 4:26). The error we often fall into is thinking it wrong to express negative emotion. The sin occurs depending on how we express that emotion not in allowing the emotion.
It was somewhat amusing to hear Papa comment all the way to the grocery store about how the streets and various buildings looked just like the ones where he lived.
Saturday, February 07, 2009
Some Reasons for Taking This Journey
A dear friend and home-care aide gave me a little book today titled: Precious Lord, Take My Hand - Meditations for Caregivers by Shelly Beach. Here is a paragraph that resonates with me:
"The work of care giving should be reserved for the truly courageous or the blindly naive ( I think we fall somewhere between those two). It is soul-crunching, spirit-bending, body-wearying work because it is redemptive work. In care giving we reflect Christ's love: unconditional love in ways that will either change us or break us." pg 25
We have experienced lots of changes to the way we are prone to rush through life. We are learning how to put aside our agenda to accommodate Papa's life which has no agenda of his making. Sometimes that is very frustrating because life must go on, things need doing, or do they? We often need to stop and examine what is so important to us at the moment and ask, 'does this really matter right now? Can it wait? Does it even need doing at all?'
We are continually learning anew to live for the moment and not be anxiously planning out the month, week, or day. Yes, we do work a calendar and make 'tentative' plans but we always keep in mind that at any moment our plans could be and often are, interrupted or changed. This has not been an easy lesson and I don't pretend to have mastered it. I hope we are getting better at it.
One more quote, from A Promise Kept by Robertson McQuilkin:
"Ours is a day of passionate pursuit of self-fulfillment. And the folk wisdom of twentieth-century America holds that fulfillment can be found only in freedom. So, if some responsibility or commitment, some relationship or value shackles, you have a moral obligation to yourself to break free.
But it's a fantasy. That doorway to freedom and fulfillment may turn out to be the doorway to a stronger imprisonment. I've watched in sadness as many friends and acquaintances march through that doorway. The new bondage may be subterranean, below the level of consciousness even. But such a person has broken one set of shackles only to shut herself or himself off from the soaring freedom of experiencing God's highest and best. He who preserves his life, affirming himself, will lose it all, said Jesus. Only the one who says no to self-interest for Christ and the gospel cause can ever find the treasure of true life - freedom and fulfillment in Christ. But we don't seem to get it." pgs 34,35
I'm praying that we are 'getting it' and I can't help sensing that this care giving journey we are on is but a piece of a much bigger picture.
"The work of care giving should be reserved for the truly courageous or the blindly naive ( I think we fall somewhere between those two). It is soul-crunching, spirit-bending, body-wearying work because it is redemptive work. In care giving we reflect Christ's love: unconditional love in ways that will either change us or break us." pg 25
We have experienced lots of changes to the way we are prone to rush through life. We are learning how to put aside our agenda to accommodate Papa's life which has no agenda of his making. Sometimes that is very frustrating because life must go on, things need doing, or do they? We often need to stop and examine what is so important to us at the moment and ask, 'does this really matter right now? Can it wait? Does it even need doing at all?'
We are continually learning anew to live for the moment and not be anxiously planning out the month, week, or day. Yes, we do work a calendar and make 'tentative' plans but we always keep in mind that at any moment our plans could be and often are, interrupted or changed. This has not been an easy lesson and I don't pretend to have mastered it. I hope we are getting better at it.
One more quote, from A Promise Kept by Robertson McQuilkin:
"Ours is a day of passionate pursuit of self-fulfillment. And the folk wisdom of twentieth-century America holds that fulfillment can be found only in freedom. So, if some responsibility or commitment, some relationship or value shackles, you have a moral obligation to yourself to break free.
But it's a fantasy. That doorway to freedom and fulfillment may turn out to be the doorway to a stronger imprisonment. I've watched in sadness as many friends and acquaintances march through that doorway. The new bondage may be subterranean, below the level of consciousness even. But such a person has broken one set of shackles only to shut herself or himself off from the soaring freedom of experiencing God's highest and best. He who preserves his life, affirming himself, will lose it all, said Jesus. Only the one who says no to self-interest for Christ and the gospel cause can ever find the treasure of true life - freedom and fulfillment in Christ. But we don't seem to get it." pgs 34,35
I'm praying that we are 'getting it' and I can't help sensing that this care giving journey we are on is but a piece of a much bigger picture.
Thursday, February 05, 2009
The Journey Begins
My mother-in-law died in 1999. My father-in-law's care fell to his daughter, Lois, at that time, which she willingly accepted. Papa shared a home with Lois and her family in the Fraser Valley of B.C. however most of the care was in her hands. Plus she worked part time.
Papa loved to putter in the yard and go for walks. He often took the dog for walks. Lois cooked the main meal, drove him to appointments after he gave up driving, and played table games with him. He was still able to manage most of his day independently, but as the dementia escalated walking the neighborhood became an exercise in getting home, which increasingly needed the assistance of strangers or the police.
By 2003, Lois became overwhelmed with the care giving responsibilities and it was decided Papa would come to live with us, his son and I, in Calgary, AB. for 4 months during the spring and summer, giving Lois some much needed respite.
Papa has a very gentle spirit and did not pose significant challenges that summer. He loved to go walking and though he insisted he could do so on his own, he often got lost. The new home proved challenging at first because he couldn't remember which was his room and occasionally walked into someone else's room. We posted a notice on his door saying, "This is Rudy's Room" with a picture of him when he was considerably younger. That helped most of the time.
Once while eating in a restaurant he needed the bathroom, so I pointed to where they were and then watched in horror as he promptly walked into the women's bathroom. I rushed after him and directed him to the men's room, realizing that more specific guidance would be necessary in future. Fortunately noone had been in the women's bathroom so no harm done.
In June of 2004, Lois brought him for a 2 week visit, with the specific goal of discussing and deciding Papa's future. Would he come and live with us full time from here on or would he be placed in a Seniors care centre? None of us wanted to put him in a care facility so I quite my job and in September, my husband rented a cargo van, drove to B.C. to get his dad and some of Papa's basic belongings, things that were familiar to him and would hopefully make the adjustment to our home a little easier.
There were many times Papa commented about 'his house' and that he wasn't living there. It caused him some distress. We attempted as best we could to explain that Lois could no longer care for him and that we wanted to care for him. Two of Lois' daughters plus some of my children lived in Calgary providing several more family members to assist from time to time.
And so our journey began. Papa had been diagnosed with dementia of the Alzheimer's type prior to his coming to live with us. Both Lois and ourselves had connected with the Alzheimer's Society for information and support. It has been invaluable. They have been very supportive and encouraging, always available with appropriate advice and encouragement as needs arose. Home Care has also been an incredible resource assisting in many ways as we have walked the road of caring for a loved one in our home.
This blog is the story of our journey. It may look different than others who travel the same road. May you find encouragement for your journey as you walk with us.
People have occasionally challenged us to consider putting Papa in a home because Life with Papa is definitely not easy. We do not presume to be heroic. We simply do what we believe to be the right thing to do for our loved one. Papa tenderly nursed his dying wife right to the very end of her life. Does he not also deserve similar treatment? We continue on with God's help.
Papa loved to putter in the yard and go for walks. He often took the dog for walks. Lois cooked the main meal, drove him to appointments after he gave up driving, and played table games with him. He was still able to manage most of his day independently, but as the dementia escalated walking the neighborhood became an exercise in getting home, which increasingly needed the assistance of strangers or the police.
By 2003, Lois became overwhelmed with the care giving responsibilities and it was decided Papa would come to live with us, his son and I, in Calgary, AB. for 4 months during the spring and summer, giving Lois some much needed respite.
Papa has a very gentle spirit and did not pose significant challenges that summer. He loved to go walking and though he insisted he could do so on his own, he often got lost. The new home proved challenging at first because he couldn't remember which was his room and occasionally walked into someone else's room. We posted a notice on his door saying, "This is Rudy's Room" with a picture of him when he was considerably younger. That helped most of the time.
Once while eating in a restaurant he needed the bathroom, so I pointed to where they were and then watched in horror as he promptly walked into the women's bathroom. I rushed after him and directed him to the men's room, realizing that more specific guidance would be necessary in future. Fortunately noone had been in the women's bathroom so no harm done.
In June of 2004, Lois brought him for a 2 week visit, with the specific goal of discussing and deciding Papa's future. Would he come and live with us full time from here on or would he be placed in a Seniors care centre? None of us wanted to put him in a care facility so I quite my job and in September, my husband rented a cargo van, drove to B.C. to get his dad and some of Papa's basic belongings, things that were familiar to him and would hopefully make the adjustment to our home a little easier.
There were many times Papa commented about 'his house' and that he wasn't living there. It caused him some distress. We attempted as best we could to explain that Lois could no longer care for him and that we wanted to care for him. Two of Lois' daughters plus some of my children lived in Calgary providing several more family members to assist from time to time.
And so our journey began. Papa had been diagnosed with dementia of the Alzheimer's type prior to his coming to live with us. Both Lois and ourselves had connected with the Alzheimer's Society for information and support. It has been invaluable. They have been very supportive and encouraging, always available with appropriate advice and encouragement as needs arose. Home Care has also been an incredible resource assisting in many ways as we have walked the road of caring for a loved one in our home.
This blog is the story of our journey. It may look different than others who travel the same road. May you find encouragement for your journey as you walk with us.
People have occasionally challenged us to consider putting Papa in a home because Life with Papa is definitely not easy. We do not presume to be heroic. We simply do what we believe to be the right thing to do for our loved one. Papa tenderly nursed his dying wife right to the very end of her life. Does he not also deserve similar treatment? We continue on with God's help.
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