I Will Remember You - Sarah McLachlan
Losing my marbles is probably a bigger daily fear than getting cancer. That's a pretty bold statement, however there is some logic behind it. A diagnosis of cancer brings with it much dread but often hope as well. There are treatments, sometimes cures or even remission; on the other end of the spectrum, it could be a death sentence. But even in that case, you have something to work with. You can plan, say goodbye, put your affairs in order and enjoy the last days with the ones you love making treasured memories.
Dementia is quite different. People you love are forgotten, things that may have brought you joy at one time are distant memories. Yesterday is a lost moment. There aren't any cures, no remission, very little treatment and no hope for future wellness. Instead of being surround by love, you are surrounded by strangers in a nursing home or people who have become strangers to you. Family begins to resent you and you are more a burden than a pleasure.
I helped a friend move her mom in with her as they began a life of coping with her progression into the depths of Alzheimer's. It was hard to watch her mom deteriorate along with their relationship. Roles were reversed and the caregiver became the needy. And the demands took a toll as if an infant was in the house. Measures had to be put in place for her safety and well-being, day care was arranged as well as after care because she couldn't be left alone. It's like having a newborn baby at a time when we think that we have finished our child rearing days.
And it seems that our government would rather heap this responsibility for care on the families at a cost that can sometimes be ill-afforded. Suddenly becoming responsible for the life of another is not always in our plans and resentment can rear it's ugly head. Where the elderly in our life had a joyful purpose, it is frustrating to be on call 24-7 to fill their needs. Yes, it's selfish I know. But like it or not, it's also reality.
At 50, we think we are done with our family responsibility. Kids are grown and it's "me time". Time to work on personal relationships. We just never stopped to put caring for elderly parents on our To Do List. Not as another full time job at least. Visits and help with shopping and appointments is one thing, arranging or taking care of the personal needs of a resentful and formerly independent adult is quite another.
Nobody wants to see their parents become someone else entirely. Dementia does that. The mind goes. The love is forgotten. Affection is a thing of the past. Conversation is difficult. And it gets worse, not better. Years and years of watching our parents/grandparents becoming strangers.
For people dealing with it in their own home, I would encourage ensuring that adequate supports are in place in your community before undertaking this drastic life change. Keeping in mind of course that the disease is progressive. All those stairs will become a danger and challenge, medical equipment may be required to assist daily living. Probably the best scenario I have ever come across was the family that turned their garage into a self-contained apartment for an elderly mother. A breezeway connected the living quarters but lives could be lived separately and conjoined at the same time. Visits back and forth were easy at all times of the day and in all types of weather and therefore put minds at ease concerning well-being and social interaction. As abilities deteriorated, the fuse was removed from the stove and dinners were shared in the main house or brought over if personal space was needed. But that doesn't work for everyone.
Rest Homes are the other option. But of course this is a very expensive form of accommodation and care, that could continue for decades and past the financial capabilities of the family, especially if both parents are housed thus. And to complicate matters, when is the right time to remove the last vestige of autonomy from our parents. Not a welcome prospect for majority of us. Loss of freedom.
But it is the violence in these care homes that is the most disturbing. All the money in the world will not necessarily keep our seniors safe. It stands to reason that if you take a (large) group of dissimilar characters and strip away their independence you will end up with at least one or two angry souls. Personality clashes and differences coupled with health problems and dementia is a heated pot of water waiting to boil over.
I heard a story recently of a woman who's husband of 30+ years often kicked her out of the marital bed because she was a stranger. What would he do waking up in a ward of 3-5 real strangers, as he suffered the indignation by being told when and what to eat? We don't usually have a choice of roommate in care facilities. Even in our post-secondary days we had some choice of who to live with. Matching similar personality/nationalities/preferences is unlikely in overcrowded rest homes. The baby-boomer are filling up the rooms at a staggering pace and the chance of married persons staying together is more a dream than reality.
There is hope for those adult children who are facing the prospect and guilt associated with placing our aging parents into appropriate facilities where they will be cared for and valued. Nothing is perfect and that includes the scenario of moving our parents into our own home. There is one place I recently heard about that gave me some hope for my own "silver" years.
It is called the Sherbrooke Community Centre in Saskatoon, Saskatchewan. There is no guarantee of a violent and aggressive-free environment but there is an operating philosophy of care that limits the likelihood of it. They call it the Eden Philosophy and you can read about it on the website. But the essence is that it is patient-directed care. If a resident wants to sleep in or skip a meal, they are allowed to do that. If they don't want their bed made that's okay. Those that are able are given chores to do, a purpose, a task, a hobby. The staff aren't working in a home of seniors, they are working in the seniors home. Respect for the elderly and infirm is as important as respect for space and property.
No means no! We repeat this mantra to our teens and live by it ourselves but forget when it comes to the elderly. How many times I have seen the frail being made to stand, move, sit or do when they didn't want to, I can't even count. The No was clear, but ignored. Because it was time to bathe/eat/sleep/watch tv/go out. All activities directed by people who know better. Give me freedom of choice or give me death I say! Many of our current and recently passed seniors fought for this very concept of freedom only to have the next generation rip it away from them.
So we put ourselves in their shoes. We all hate being told what to do! It was a day of rejoicing when we could embark into the world on our own and leaving the rules and restrictions of our parents in the rear-view. Why would we go back? Why would we expect that our parents would do it after a half-century or more of freedom? Not knowing what to do but wanting the best for our parents, we make decisions for them. We leave them in the care of others and walk away with our heads hanging with the weight of guilt for making the decision.
People who feel vulnerable will try to protect themselves. And who wouldn't feel vulnerable when they are taken from everything they know and feel comfortable with and moved to a strange and different environment? The confusion intensifies. And when they insist that they want to go home, the well-intentioned tell them they are home. But with a few marbles still rolling around the warped floor of the attic, the senior knows it's not true. So all you have done is succeeded in making them feel foolish and stupid. They may correct you and their voice and/or actions may betray the fragility of their physical form.
Suddenly I understand the plight of seniors suffering dementia and I apologize to the senior that I belittled with the best of intentions, forgetting that she didn't need the help I wanted to give. As we remind Alzheimer's patients about appointments, medications, events, their family we are deeming them with kindness of our heart. No one likes to be corrected, especially when they are struggling to understand or hear. We feel bad when we sense the frustration of those around us and get angry at ourselves for not getting it. We feel insulted for being made to feel foolish and can often lash out in anger. Sometimes we use our voice, sometimes we use our physical power. And like the bully in the playground, if we can't attack our tormentor, we will find someone weaker where we have a chance of winning the fight. Sad but true. Once a bully always a bully. When violence is used to solve problems in youth, it remains a tactic throughout our life.
In the meantime...what do we do? Can we do anything to stop the ravaging of our mind? Well brain training is supposed to be one thing. Like a muscle that needs to be worked out to stay strong. So I learned how to do Sudoku and I try every day to do the Cricklers puzzle. Cricklers are crossword type puzzles passed on daily events - a little bonus learning. And I drink caffeine, which I learned from my Cricklers that caffeine supposedly hampers the production of protein plaques that are a prominent precursor to Alzheimer's. I've heard that 5 cups a day can actually reverse memory problems...but then you run the risk of other issues. I guess for that I will stick to the old stand-by of writing it down and then tying a string around my finger to try and remember where the paper is that I wrote it on. It seems that the string there has some scientific validity. There are nerves in the index fingers that lead right to the hippocampus which is the part of the brain responsible for memory. The string becomes a constant stimulator of those nerves keeping that part of the brain in heightened activity mode. Hmmm...I wonder if my permanently bent index finger is the reason I can't remember? Or maybe I can blame the master of forgetfulness, my own Mother and heredity.
I think that it's more a question of priorities. We remember what we believe to be most important to remember. With all the passwords, PIN's and gadgets we need to keep track of, it's no wonder our minds are bogged down with struggling memories. Add aluminium and all the other environmental factors affecting our health and well-being and it's a wonder we aren't all wandering the streets with blank gazes and straight jackets.
There is some additional hope for me personally. Music. Music is the life that runs through the cobwebs of my brain and stimulates memories and emotions. And it's always playing. Not loud but always audible. I may be on to something, for it seems that within the Aging and Dementia Care community, the notion of Music Therapy is gaining an audience. Music doesn't need to be cognitively evaluated. Music can change moods, reduce stress and even help with pain management. And the best part is that in cases of dementia, the part of the brain that processes music and our responses to it stay intact the longest as the disease progresses. So when you see my foot taping away like I have drumsticks between my toes, don't worry, I'm just staving off Alzheimer's.
It's probably far from scientific but it is fun. An alleged test for determining your likelihood of getting Alzheimer's/Dementia that was passed along to me via email. How strong is your brain? Try reading this...
Dementia is quite different. People you love are forgotten, things that may have brought you joy at one time are distant memories. Yesterday is a lost moment. There aren't any cures, no remission, very little treatment and no hope for future wellness. Instead of being surround by love, you are surrounded by strangers in a nursing home or people who have become strangers to you. Family begins to resent you and you are more a burden than a pleasure.
I helped a friend move her mom in with her as they began a life of coping with her progression into the depths of Alzheimer's. It was hard to watch her mom deteriorate along with their relationship. Roles were reversed and the caregiver became the needy. And the demands took a toll as if an infant was in the house. Measures had to be put in place for her safety and well-being, day care was arranged as well as after care because she couldn't be left alone. It's like having a newborn baby at a time when we think that we have finished our child rearing days. And it seems that our government would rather heap this responsibility for care on the families at a cost that can sometimes be ill-afforded. Suddenly becoming responsible for the life of another is not always in our plans and resentment can rear it's ugly head. Where the elderly in our life had a joyful purpose, it is frustrating to be on call 24-7 to fill their needs. Yes, it's selfish I know. But like it or not, it's also reality.
At 50, we think we are done with our family responsibility. Kids are grown and it's "me time". Time to work on personal relationships. We just never stopped to put caring for elderly parents on our To Do List. Not as another full time job at least. Visits and help with shopping and appointments is one thing, arranging or taking care of the personal needs of a resentful and formerly independent adult is quite another.
 |
| Forget-Me-Nots |
For people dealing with it in their own home, I would encourage ensuring that adequate supports are in place in your community before undertaking this drastic life change. Keeping in mind of course that the disease is progressive. All those stairs will become a danger and challenge, medical equipment may be required to assist daily living. Probably the best scenario I have ever come across was the family that turned their garage into a self-contained apartment for an elderly mother. A breezeway connected the living quarters but lives could be lived separately and conjoined at the same time. Visits back and forth were easy at all times of the day and in all types of weather and therefore put minds at ease concerning well-being and social interaction. As abilities deteriorated, the fuse was removed from the stove and dinners were shared in the main house or brought over if personal space was needed. But that doesn't work for everyone.
Rest Homes are the other option. But of course this is a very expensive form of accommodation and care, that could continue for decades and past the financial capabilities of the family, especially if both parents are housed thus. And to complicate matters, when is the right time to remove the last vestige of autonomy from our parents. Not a welcome prospect for majority of us. Loss of freedom.
But it is the violence in these care homes that is the most disturbing. All the money in the world will not necessarily keep our seniors safe. It stands to reason that if you take a (large) group of dissimilar characters and strip away their independence you will end up with at least one or two angry souls. Personality clashes and differences coupled with health problems and dementia is a heated pot of water waiting to boil over.
 |
| Stages of Life |
There is hope for those adult children who are facing the prospect and guilt associated with placing our aging parents into appropriate facilities where they will be cared for and valued. Nothing is perfect and that includes the scenario of moving our parents into our own home. There is one place I recently heard about that gave me some hope for my own "silver" years.
It is called the Sherbrooke Community Centre in Saskatoon, Saskatchewan. There is no guarantee of a violent and aggressive-free environment but there is an operating philosophy of care that limits the likelihood of it. They call it the Eden Philosophy and you can read about it on the website. But the essence is that it is patient-directed care. If a resident wants to sleep in or skip a meal, they are allowed to do that. If they don't want their bed made that's okay. Those that are able are given chores to do, a purpose, a task, a hobby. The staff aren't working in a home of seniors, they are working in the seniors home. Respect for the elderly and infirm is as important as respect for space and property.
No means no! We repeat this mantra to our teens and live by it ourselves but forget when it comes to the elderly. How many times I have seen the frail being made to stand, move, sit or do when they didn't want to, I can't even count. The No was clear, but ignored. Because it was time to bathe/eat/sleep/watch tv/go out. All activities directed by people who know better. Give me freedom of choice or give me death I say! Many of our current and recently passed seniors fought for this very concept of freedom only to have the next generation rip it away from them.
So we put ourselves in their shoes. We all hate being told what to do! It was a day of rejoicing when we could embark into the world on our own and leaving the rules and restrictions of our parents in the rear-view. Why would we go back? Why would we expect that our parents would do it after a half-century or more of freedom? Not knowing what to do but wanting the best for our parents, we make decisions for them. We leave them in the care of others and walk away with our heads hanging with the weight of guilt for making the decision.
 |
| from facebook post |
People who feel vulnerable will try to protect themselves. And who wouldn't feel vulnerable when they are taken from everything they know and feel comfortable with and moved to a strange and different environment? The confusion intensifies. And when they insist that they want to go home, the well-intentioned tell them they are home. But with a few marbles still rolling around the warped floor of the attic, the senior knows it's not true. So all you have done is succeeded in making them feel foolish and stupid. They may correct you and their voice and/or actions may betray the fragility of their physical form.
Suddenly I understand the plight of seniors suffering dementia and I apologize to the senior that I belittled with the best of intentions, forgetting that she didn't need the help I wanted to give. As we remind Alzheimer's patients about appointments, medications, events, their family we are deeming them with kindness of our heart. No one likes to be corrected, especially when they are struggling to understand or hear. We feel bad when we sense the frustration of those around us and get angry at ourselves for not getting it. We feel insulted for being made to feel foolish and can often lash out in anger. Sometimes we use our voice, sometimes we use our physical power. And like the bully in the playground, if we can't attack our tormentor, we will find someone weaker where we have a chance of winning the fight. Sad but true. Once a bully always a bully. When violence is used to solve problems in youth, it remains a tactic throughout our life.
*****************************************************
In the meantime...what do we do? Can we do anything to stop the ravaging of our mind? Well brain training is supposed to be one thing. Like a muscle that needs to be worked out to stay strong. So I learned how to do Sudoku and I try every day to do the Cricklers puzzle. Cricklers are crossword type puzzles passed on daily events - a little bonus learning. And I drink caffeine, which I learned from my Cricklers that caffeine supposedly hampers the production of protein plaques that are a prominent precursor to Alzheimer's. I've heard that 5 cups a day can actually reverse memory problems...but then you run the risk of other issues. I guess for that I will stick to the old stand-by of writing it down and then tying a string around my finger to try and remember where the paper is that I wrote it on. It seems that the string there has some scientific validity. There are nerves in the index fingers that lead right to the hippocampus which is the part of the brain responsible for memory. The string becomes a constant stimulator of those nerves keeping that part of the brain in heightened activity mode. Hmmm...I wonder if my permanently bent index finger is the reason I can't remember? Or maybe I can blame the master of forgetfulness, my own Mother and heredity.
I think that it's more a question of priorities. We remember what we believe to be most important to remember. With all the passwords, PIN's and gadgets we need to keep track of, it's no wonder our minds are bogged down with struggling memories. Add aluminium and all the other environmental factors affecting our health and well-being and it's a wonder we aren't all wandering the streets with blank gazes and straight jackets.
There is some additional hope for me personally. Music. Music is the life that runs through the cobwebs of my brain and stimulates memories and emotions. And it's always playing. Not loud but always audible. I may be on to something, for it seems that within the Aging and Dementia Care community, the notion of Music Therapy is gaining an audience. Music doesn't need to be cognitively evaluated. Music can change moods, reduce stress and even help with pain management. And the best part is that in cases of dementia, the part of the brain that processes music and our responses to it stay intact the longest as the disease progresses. So when you see my foot taping away like I have drumsticks between my toes, don't worry, I'm just staving off Alzheimer's. It's probably far from scientific but it is fun. An alleged test for determining your likelihood of getting Alzheimer's/Dementia that was passed along to me via email. How strong is your brain? Try reading this...
Good example of a Brain Study: If you can read this OUT LOUD, you have a strong mind.And better than that: Alzheimer's is a long long, way down the road before it ever gets anywhere near you.
7H15 M3554G3
53RV35 7O PR0V3
H0W 0UR M1ND5 C4N
D0 4M4Z1NG 7H1NG5!
1MPR3551V3 7H1NG5!
1N 7H3 B3G1NN1NG
17 WA5 H4RD BU7
N0W, 0N 7H15 LIN3
Y0UR M1ND 1S
R34D1NG 17
4U70M471C4LLY
W17H 0U7 3V3N
7H1NK1NG 4B0U7 17,
B3 PROUD! 0NLY
C3R741N P30PL3 C4N
R3AD 7H15.
PL3453 F0RW4RD 1F
U C4N R34D 7H15.
53RV35 7O PR0V3
H0W 0UR M1ND5 C4N
D0 4M4Z1NG 7H1NG5!
1MPR3551V3 7H1NG5!
1N 7H3 B3G1NN1NG
17 WA5 H4RD BU7
N0W, 0N 7H15 LIN3
Y0UR M1ND 1S
R34D1NG 17
4U70M471C4LLY
W17H 0U7 3V3N
7H1NK1NG 4B0U7 17,
B3 PROUD! 0NLY
C3R741N P30PL3 C4N
R3AD 7H15.
PL3453 F0RW4RD 1F
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credit where credit is due:
Cricklers
http://crickler.com/crickler.html
Nature of Things
http://www.cbc.ca/natureofthings/features/promising-new-treatments-for-alzheimers
Sherbrooke Community Centre
http://www.ctvnews.ca/w5/saskatoon-care-home-offers-unique-approach-for-residents-with-dementia-1.1686936
Music Therapy
http://www.alzfdn.org/EducationandCare/musictherapy.html
Yahoo Answers
https://ca.answers.yahoo.com/question/index?qid=20100530001016AAKFZl6
