"Just
the knowledge that a good book is awaiting one at the end of a long day
makes that day happier” Kathleen Norris
I love to read, and I just finished the first novel of Tatjana Soli, The Lotus Eaters. The novel is a blend of fact and fiction and set in Vietnam during the Vietnam War. That war was a large part of my young adult years. The people I went to college with were returning war veterans. I dated a young man who had served in the secret service, and I was friends with someone who had been a Green Beret. I did not see the anti-war protests personally --- just on television, because the rural area in which I grew up did not join in the demonstrations of derision; but it was obvious the pain and confusion experienced by these returning vets to the country they had served. This book is a well- written story, fiction but based on some actual events. As caregivers for someone with dementia, we need ways that we can bring pleasure and relief to ourselves. Not much for television or crafts or needlework, I find entertainment in reading. That was something Dwane and I always had in common: our love of books and reading.
What are the ways that you find relaxation and rejuvenation?
Jun 30, 2012
Jun 29, 2012
Gratitude
"I read your blog every day. It keeps me going. Please continue your blog as you have been." comment from a reader who has a spouse with Lewy Bodies Dementia
I am so grateful for comments like the one above from readers who affirm that this blog is a source of support to them. I know how busy we caregivers are, and for a reader to take the time to write such a lovely note of encouragement is so appreciated. This comment caused me to think of other things about which to be grateful. The staff at the assisted care facility told me today that Dwane is happy there. He seems to complain only to me and other select family members. It makes me wonder which is the 'real' Dwane: the one who complains to a couple people or the one who appears happy and says he is happy with multiple staff members at the facility. Perhaps both are the 'real' person, but at least it gives me comfort to take the word and observations of these trained professionals. I am grateful too, for a staff member to find me to tell me how soothing and respectful are the conversations and visits my sister has with Dwane. I am grateful for all these examples of hope and support. Respectful support for both Dwane and me.
When we seem to be the target of some criticism is perhaps the very time it is important to look around and see all the blessings in our lives, all the people who do love and support us and the care receiver, all the good we are doing - collectively, in the ways we provide caregiving. Thank you to each of you. You have my admiration and gratitude.
I am so grateful for comments like the one above from readers who affirm that this blog is a source of support to them. I know how busy we caregivers are, and for a reader to take the time to write such a lovely note of encouragement is so appreciated. This comment caused me to think of other things about which to be grateful. The staff at the assisted care facility told me today that Dwane is happy there. He seems to complain only to me and other select family members. It makes me wonder which is the 'real' Dwane: the one who complains to a couple people or the one who appears happy and says he is happy with multiple staff members at the facility. Perhaps both are the 'real' person, but at least it gives me comfort to take the word and observations of these trained professionals. I am grateful too, for a staff member to find me to tell me how soothing and respectful are the conversations and visits my sister has with Dwane. I am grateful for all these examples of hope and support. Respectful support for both Dwane and me.
When we seem to be the target of some criticism is perhaps the very time it is important to look around and see all the blessings in our lives, all the people who do love and support us and the care receiver, all the good we are doing - collectively, in the ways we provide caregiving. Thank you to each of you. You have my admiration and gratitude.
Jun 28, 2012
Consider Priorities
"The best things in life aren't things." Art Buchwald
Last night a neighbor's visitor was outside playing his guitar and singing. Just lovely, as it echoed against the canyon walls. It was a serenade for us all. An unexpected event in the evening to accompany reading a good book.
What are the things that aren't things that you enjoy in life? Taking Dwane to PT is something I enjoy. I really enjoy the respectful way the Physical Therapist treats him, and the difference it makes in his posture and flexibility from being there. It was fun to see Dwane's enjoyment of the mango strawberry smoothie I had for him after his work with the PT.
I enjoy true connections with people, real conversations. I enjoy knowing the good that is happening in someone's life. I am in awe of the miracles one sometimes sees in the lives of others. I saw my first fawn this week, and that brings a smile to my face as I see nature replenishing herself.
What are the best things in life for you?
Last night a neighbor's visitor was outside playing his guitar and singing. Just lovely, as it echoed against the canyon walls. It was a serenade for us all. An unexpected event in the evening to accompany reading a good book.
What are the things that aren't things that you enjoy in life? Taking Dwane to PT is something I enjoy. I really enjoy the respectful way the Physical Therapist treats him, and the difference it makes in his posture and flexibility from being there. It was fun to see Dwane's enjoyment of the mango strawberry smoothie I had for him after his work with the PT.
I enjoy true connections with people, real conversations. I enjoy knowing the good that is happening in someone's life. I am in awe of the miracles one sometimes sees in the lives of others. I saw my first fawn this week, and that brings a smile to my face as I see nature replenishing herself.
What are the best things in life for you?
Jun 27, 2012
Confusing aspect of DLB
"One feature that distinguishes DLB (Dementia with Lewy Bodies) from other forms of dementia, such as Alzheimer's disease, is clear fluctuations in an individual's attention and alertness. At times, a person who has DLB may be able to handle daily activities without much trouble and then suddenly may become confused for a few minutes, a few hours or for several days." Mayo Clinic literature
That is one of the most confusing aspects of Lewy Bodies Dementia, and I would suggest that it may contribute to the difficulty the person with dementia has with being aware of her or his own functioning ability. It varies considerably, drastically even. So, a person with DLB may appear to people who do not see him or her often that the person is lucid and capable, and they may be in that moment. It is confusing even to me, a person who has spent 24 hours a day for most of the last five years with someone with DLB. One minute he may give a brilliant suggestion, such as to run the fan of the furnace on the cool cycle to help keep the house cool, and the next minute he does not remember if he was told he had DLB. Very confusing. And, this is an additional characteristic of DLB, in addition to the dementia: which manifests itself in DLB as lacking judgment, inability to solve problems, inability to express his or her thoughts or to understand what others are saying and delusions. As caregivers, let us be gentle with ourselves when we are confused about the functioning level of the person who receives our care, and let us consider that even the care receiver may be legitimately confused about his or her own functioning. Because it is better in some moments than others.
That is one of the most confusing aspects of Lewy Bodies Dementia, and I would suggest that it may contribute to the difficulty the person with dementia has with being aware of her or his own functioning ability. It varies considerably, drastically even. So, a person with DLB may appear to people who do not see him or her often that the person is lucid and capable, and they may be in that moment. It is confusing even to me, a person who has spent 24 hours a day for most of the last five years with someone with DLB. One minute he may give a brilliant suggestion, such as to run the fan of the furnace on the cool cycle to help keep the house cool, and the next minute he does not remember if he was told he had DLB. Very confusing. And, this is an additional characteristic of DLB, in addition to the dementia: which manifests itself in DLB as lacking judgment, inability to solve problems, inability to express his or her thoughts or to understand what others are saying and delusions. As caregivers, let us be gentle with ourselves when we are confused about the functioning level of the person who receives our care, and let us consider that even the care receiver may be legitimately confused about his or her own functioning. Because it is better in some moments than others.
Jun 26, 2012
One's Own Perspective
"I should not talk so much about myself if there were anybody else whom I knew as well. Unfortunately, I am confined to this theme by the narrowness of my experience. " Thoreau in Walden
I am re-reading Walden because I, too, live in the woods, and I, too, am choosing solitude -- in my case to heal from times of over responsibility. There are many ways we can transverse the interior journey. Thoreau cites examples of people chaining themselves to trees, or sitting facing the sun, or enduring other physical hardships to do a sort of penance. Thoreau says that none of these are more astonishing than the examples he daily witnesses in his life near Concord. I would agree with Thoreau: none of the cited examples are more astonishing than what I see in the daily lives of my fellow caregivers -- who dig deep within themselves to do the right thing.
It is sometimes interesting to me that I receive some criticism from people reading this blog who feel I should be less personal; while other people will react to the same blog writings and tell me they don't think I am personal enough. My own life, my own reaction to caregiving is all I can relate. My hope in relating my experience is to provide information and support to others in caregiving situations. It seems important that we acknowledge the hardships of caregiving. Perhaps you do not believe in the need for penance, and I am not advocating that one should. But, I do think we can look at our daily lives -- and in the case of this blog that daily life involves caregiving tasks -- and choose to become better persons as a result of it. This time will pass, of that we can be assured. Will it pass with us being persons of more maturity and compassion? That is our choice. I believe that it takes some self reflection in order to make that choice. I love Socrates's line, "An unexamined life is not worth living." I agree. We benefit when we examine our choices, our actions, our words, our motives, and that is one of the things I hope to support with this blog. Lives lived from loving examination.
I am re-reading Walden because I, too, live in the woods, and I, too, am choosing solitude -- in my case to heal from times of over responsibility. There are many ways we can transverse the interior journey. Thoreau cites examples of people chaining themselves to trees, or sitting facing the sun, or enduring other physical hardships to do a sort of penance. Thoreau says that none of these are more astonishing than the examples he daily witnesses in his life near Concord. I would agree with Thoreau: none of the cited examples are more astonishing than what I see in the daily lives of my fellow caregivers -- who dig deep within themselves to do the right thing.
It is sometimes interesting to me that I receive some criticism from people reading this blog who feel I should be less personal; while other people will react to the same blog writings and tell me they don't think I am personal enough. My own life, my own reaction to caregiving is all I can relate. My hope in relating my experience is to provide information and support to others in caregiving situations. It seems important that we acknowledge the hardships of caregiving. Perhaps you do not believe in the need for penance, and I am not advocating that one should. But, I do think we can look at our daily lives -- and in the case of this blog that daily life involves caregiving tasks -- and choose to become better persons as a result of it. This time will pass, of that we can be assured. Will it pass with us being persons of more maturity and compassion? That is our choice. I believe that it takes some self reflection in order to make that choice. I love Socrates's line, "An unexamined life is not worth living." I agree. We benefit when we examine our choices, our actions, our words, our motives, and that is one of the things I hope to support with this blog. Lives lived from loving examination.
Jun 25, 2012
Books on Tape
When asked what he thought people needed to do to bring peace, the Dalai Lama said, "Critical thinking, following by action."
The librarian,who is a friend, today suggested books on tape for Dwane. Not the kind that people get to listen to in their cars. These books on tape include a simple-to-use cd player and are designed for the visually impaired. I checked the machine and a cd out and will have him try it to see if it works for him. It may help the problem he has following the print because of his double vision. Perhaps this will enable him to continue to enjoy books. Every state library has these cd machines and cd's for anyone who has difficulty reading. Eye doctors have done all they can to help with this double vision, so perhaps this may be of help. The program is called, Talking Books.
The librarian,who is a friend, today suggested books on tape for Dwane. Not the kind that people get to listen to in their cars. These books on tape include a simple-to-use cd player and are designed for the visually impaired. I checked the machine and a cd out and will have him try it to see if it works for him. It may help the problem he has following the print because of his double vision. Perhaps this will enable him to continue to enjoy books. Every state library has these cd machines and cd's for anyone who has difficulty reading. Eye doctors have done all they can to help with this double vision, so perhaps this may be of help. The program is called, Talking Books.
Jun 24, 2012
Forgiveness
"Forgiveness doesn't mean forgotten. It doesn't even mean a pardon, but if we hold on to our anger and resentment, then it is only ourselves who are being punished." Amish Grace film line
Life provides each of us opportunities to forgive, sometimes the opportunities seem to come in clusters. Some years ago I read the book, Disappearance of the Universe, by Gary Renard. Powerful. His premise is that none of this (what seems to be the story of our lives) is really real, and that the only reason for being alive is to forgive --- ourselves and others. He even suggests a practice of 'pre-forgiving' to prevent some of the injuries one may sustain in life. You may or may not subscribe to his premise, but most religions echo the encouragement of the practice of forgiveness. One reason to forgive is that holding a grudge is harmful to our health. There have been actual studies in which the negative thoughts and actions of a person harm their own heart and the hearts of others exposed to this negativity. As caregivers, we probably have the opportunity to forgive ourselves for any times we have shown up in ways less than we wanted. And, we most certainly have all experienced the injustices directed at us by others. Today, let us consider making the choice to forgive ourselves and others. What if it is as simple as making that choice? -- I forgive.
Life provides each of us opportunities to forgive, sometimes the opportunities seem to come in clusters. Some years ago I read the book, Disappearance of the Universe, by Gary Renard. Powerful. His premise is that none of this (what seems to be the story of our lives) is really real, and that the only reason for being alive is to forgive --- ourselves and others. He even suggests a practice of 'pre-forgiving' to prevent some of the injuries one may sustain in life. You may or may not subscribe to his premise, but most religions echo the encouragement of the practice of forgiveness. One reason to forgive is that holding a grudge is harmful to our health. There have been actual studies in which the negative thoughts and actions of a person harm their own heart and the hearts of others exposed to this negativity. As caregivers, we probably have the opportunity to forgive ourselves for any times we have shown up in ways less than we wanted. And, we most certainly have all experienced the injustices directed at us by others. Today, let us consider making the choice to forgive ourselves and others. What if it is as simple as making that choice? -- I forgive.
Jun 23, 2012
Hatred is destructive
"Hate is a very big and very hungry thing with lots of sharp teeth, and it will eat up your whole heart and leave no room left for love," Amish Grace movie line.
It is sometimes tempting to hate. Hate the disease that has destroyed the essence of someone we love, hate the people who misunderstand and judge us for the decisions we make within the caregiving role, hate how we react sometimes to the disease, hate the way the disease imprisons both the care receiver and the caregiver. Lots of excuses to hate, and it seems we humans are sometimes on the lookout for an excuse upon which to lay the blame for the behaviors we choose. But, the line above speaks the truth. Hate will destroy the person carrying it. I watched the Amish Grace movie, based on the true events of the school shooting, and I wept at the graciousness of the Amish people in forgiving the man who shot their children and in their kindness to his widow and children. If these people could choose love and nobility in such difficult circumstances, surely we can choose to express love in our situations. What action of love can you perform for yourself and others today?
It is sometimes tempting to hate. Hate the disease that has destroyed the essence of someone we love, hate the people who misunderstand and judge us for the decisions we make within the caregiving role, hate how we react sometimes to the disease, hate the way the disease imprisons both the care receiver and the caregiver. Lots of excuses to hate, and it seems we humans are sometimes on the lookout for an excuse upon which to lay the blame for the behaviors we choose. But, the line above speaks the truth. Hate will destroy the person carrying it. I watched the Amish Grace movie, based on the true events of the school shooting, and I wept at the graciousness of the Amish people in forgiving the man who shot their children and in their kindness to his widow and children. If these people could choose love and nobility in such difficult circumstances, surely we can choose to express love in our situations. What action of love can you perform for yourself and others today?
Jun 22, 2012
When is Assisted Living Appropriate?
Every word we utter to another human being has an effect." Howard Zinn
When is the transition into assisted living appropriate and right? The Mayo Clinic newsletter a few issues ago said that most caregivers wait too long before putting someone into assisted living, and I think that is correct. It was at least a year, during which people close to me were reflecting to me that caregiving was damaging my health, before I actually took the actions to make that transition occur. For those people who question whether assisted living is right for a person, I would like to reassure them. A person cannot just decide to have someone move into assisted living. Thankfully, there are safeguards in place to prevent such elder abuse. The assisted living facility does its own evaluation --- in our case it was more than one assisted living facility because some of the others told us his needs were too great for them to address. Then, there has to be a statement from a doctor familiar with the care receiver saying assisted living is now the most appropriate setting. If there is longterm care insurance, which we have, there is another evaluation from them with a visiting psychiatric nurse. A person cannot be in and remain in assisted living without these evaluations supporting that placement. When any family member supports the delusion of the care receiver that assisted living is not appropriate, it is a tremendous disservice to the care receiver, as well as the caregiver who had to make that very difficult decision for the well being of both.
When is the transition into assisted living appropriate and right? The Mayo Clinic newsletter a few issues ago said that most caregivers wait too long before putting someone into assisted living, and I think that is correct. It was at least a year, during which people close to me were reflecting to me that caregiving was damaging my health, before I actually took the actions to make that transition occur. For those people who question whether assisted living is right for a person, I would like to reassure them. A person cannot just decide to have someone move into assisted living. Thankfully, there are safeguards in place to prevent such elder abuse. The assisted living facility does its own evaluation --- in our case it was more than one assisted living facility because some of the others told us his needs were too great for them to address. Then, there has to be a statement from a doctor familiar with the care receiver saying assisted living is now the most appropriate setting. If there is longterm care insurance, which we have, there is another evaluation from them with a visiting psychiatric nurse. A person cannot be in and remain in assisted living without these evaluations supporting that placement. When any family member supports the delusion of the care receiver that assisted living is not appropriate, it is a tremendous disservice to the care receiver, as well as the caregiver who had to make that very difficult decision for the well being of both.
Jun 21, 2012
Charles Schulz Philosphy
"The people who make a difference in your life are not the ones with the
most credentials,the most money...or the most awards.
They simply are the ones who care the most." Charles Schulz
A dear friend sent me the above, which is attributed to Charles Schulz. The writing leads you through a quiz of sorts to name the five wealthiest individuals in the world, five who won the Miss America pageant, etc. Then it asks you to name people who made a difference in your life. The obvious point is that we will not always remember the headliners, but we will remember those people who loved us and made a difference in our lives. There is well-regarded research that says that it only takes one caring person to make a difference in someone else's life. For a child, it only takes one person who cares about that child for that child to be able to believe in him or herself.
Who are the people who loved you enough for you to believe in yourself?
Who have you loved enough to help them believe in themselves? We each can make a difference.
most credentials,the most money...or the most awards.
They simply are the ones who care the most." Charles Schulz
A dear friend sent me the above, which is attributed to Charles Schulz. The writing leads you through a quiz of sorts to name the five wealthiest individuals in the world, five who won the Miss America pageant, etc. Then it asks you to name people who made a difference in your life. The obvious point is that we will not always remember the headliners, but we will remember those people who loved us and made a difference in our lives. There is well-regarded research that says that it only takes one caring person to make a difference in someone else's life. For a child, it only takes one person who cares about that child for that child to be able to believe in him or herself.
Who are the people who loved you enough for you to believe in yourself?
Who have you loved enough to help them believe in themselves? We each can make a difference.
Jun 20, 2012
Power of Love
"When the power of love overcomes the love of power, the world shall know peace." Jimi Hendrix
The Prayer of St. Francis has been a favorite of mine for many, many years. It says essentially the same thing as what Hendrix says above, with the famous opening lines, "Make me an instrument of Your peace. Where there is hatred, let me sow love." We each are either a power for love or we are in love with power. It is our choice. Which is it for you? The love of power can take many forms. Most often it shows up as someone trying to control or manipulate other people or situations. I am not sure it is possible for an individual to know whether he or she is acting out of love or out of power unless one has identified, befriended and disempowered the ego. Make no mistake: we each do impact our worlds. The only choice we have is how. How do we impact our worlds? The best way is to make it a conscious choice. A conscious choice for how we want to treat other people. Everyone has his or his own agency of control. It has been a deliberate practice of mine for many years to never interfere with the free agency of other people. That is why it was so hard for me to move Dwane into assisted living. It was against my principles to take action that the other person did not initiate. It seems to me that we who are caregivers must do that sometimes. We must decide what is best for the other, and trust that God will help us make the very best decision. A practice I have is to pray for discernment to know what is in the highest and best interest of everyone involved. What helps you make decisions?
The Prayer of St. Francis has been a favorite of mine for many, many years. It says essentially the same thing as what Hendrix says above, with the famous opening lines, "Make me an instrument of Your peace. Where there is hatred, let me sow love." We each are either a power for love or we are in love with power. It is our choice. Which is it for you? The love of power can take many forms. Most often it shows up as someone trying to control or manipulate other people or situations. I am not sure it is possible for an individual to know whether he or she is acting out of love or out of power unless one has identified, befriended and disempowered the ego. Make no mistake: we each do impact our worlds. The only choice we have is how. How do we impact our worlds? The best way is to make it a conscious choice. A conscious choice for how we want to treat other people. Everyone has his or his own agency of control. It has been a deliberate practice of mine for many years to never interfere with the free agency of other people. That is why it was so hard for me to move Dwane into assisted living. It was against my principles to take action that the other person did not initiate. It seems to me that we who are caregivers must do that sometimes. We must decide what is best for the other, and trust that God will help us make the very best decision. A practice I have is to pray for discernment to know what is in the highest and best interest of everyone involved. What helps you make decisions?
Jun 19, 2012
Misinformation is a Disservice
Providing misinformation to anyone is a disservice, and in our case, adds to the already-too-activated psychological defense mechanisms of denial, blaming, justification and rationalization. The relative who has inserted herself has apparently told Dwane that: he can't have the diagnosis of Lewy Bodies Dementia because that can only be diagnosed after death through an autopsy, that it is way too early for him to be in assisted living and he should be living independently, and that he has at least 7 good years left.
Wrong, wrong and I wonder where she obtained her crystal ball. It is my belief that we can only deal with that which we are willing to face factually. So, let's look at the facts as we currently know them from one of the best medical facilities in the world, Mayo Clinic. Dementia can be diagnosed through a thorough battery of neurological and psychological tests. Even twenty years ago, my brother-in-law was diagnosed through the expertise of Bethesda with an early onset dementia, called Pick's Disease. In our case, Dwane was tested at Mayo Clinic and he meets all of the criteria, has all the symptoms of Lewy Bodies Dementia, which includes: dementia or diminished cognitive functioning in the form of deficits in judgment, comprehension, problem solving and reasoning; fluctuating attention and alertness; visual hallucinations; REM sleep disorder, Parkinsonian's features, and delusions. The psychiatrist at Mayo Clinic said that Dwane had all the classic symptoms of Lewy Bodies Dementia.
Living independently? Here are the facts: Dwane has not paid a bill in at least six years nor done any of the management of finances, he does not prepare meals, he has been told he should not drive, he is often unable to figure out how to dial a phone or use a remote for television. What he can do independently is get the food off a plate and into his mouth, dress himself with minimal help -- with modified clothing, and walk.
7 good years left? Well, it may depend on how one defines "good years", and no one can predict the human spirit and will to live. What Mayo Clinic says about Lewy Bodies Dementia is "Some people die within 2-3 years after diagnosis, while others may do well for 5-10 years." We had two good years following the diagnosis, and since then it has been a steady but erratic tumble downward in functioning and overall well-being.
These are the facts as we currently know them. It does Dwane no good to distort these facts. In fact, it is harmful because it gives him false hope and an excuse to be resentful.
In discussing the diagnosis of dementia in the Mayo Clinic Newsletter, Angela Lunde says, "In some cases, doctors may use the more vague terms to avoid breaking bad news. Alternatively, he or she could say "we can't really know until autopsy." The truth is however, that after an adequate evaluation, a doctor can offer a diagnosis that is accurate 90 percent of the time.:
Wrong, wrong and I wonder where she obtained her crystal ball. It is my belief that we can only deal with that which we are willing to face factually. So, let's look at the facts as we currently know them from one of the best medical facilities in the world, Mayo Clinic. Dementia can be diagnosed through a thorough battery of neurological and psychological tests. Even twenty years ago, my brother-in-law was diagnosed through the expertise of Bethesda with an early onset dementia, called Pick's Disease. In our case, Dwane was tested at Mayo Clinic and he meets all of the criteria, has all the symptoms of Lewy Bodies Dementia, which includes: dementia or diminished cognitive functioning in the form of deficits in judgment, comprehension, problem solving and reasoning; fluctuating attention and alertness; visual hallucinations; REM sleep disorder, Parkinsonian's features, and delusions. The psychiatrist at Mayo Clinic said that Dwane had all the classic symptoms of Lewy Bodies Dementia.
Living independently? Here are the facts: Dwane has not paid a bill in at least six years nor done any of the management of finances, he does not prepare meals, he has been told he should not drive, he is often unable to figure out how to dial a phone or use a remote for television. What he can do independently is get the food off a plate and into his mouth, dress himself with minimal help -- with modified clothing, and walk.
7 good years left? Well, it may depend on how one defines "good years", and no one can predict the human spirit and will to live. What Mayo Clinic says about Lewy Bodies Dementia is "Some people die within 2-3 years after diagnosis, while others may do well for 5-10 years." We had two good years following the diagnosis, and since then it has been a steady but erratic tumble downward in functioning and overall well-being.
These are the facts as we currently know them. It does Dwane no good to distort these facts. In fact, it is harmful because it gives him false hope and an excuse to be resentful.
In discussing the diagnosis of dementia in the Mayo Clinic Newsletter, Angela Lunde says, "In some cases, doctors may use the more vague terms to avoid breaking bad news. Alternatively, he or she could say "we can't really know until autopsy." The truth is however, that after an adequate evaluation, a doctor can offer a diagnosis that is accurate 90 percent of the time.:
Jun 18, 2012
Naming the Beauty
"We help heal the world by having the courage to name the beauty in it and call it out into full splendor." Jesse Jennings
Once again, it depends upon where one focuses one's attention. Do we see beauty or do we see difficulties? Time spent with Dwane nowadays tends to be upsetting to me because of his negativity. It can cause me so much distress that I cannot sleep. He is having a worse time with negativity right now because he is discontent with being in assisted living, fueled by misinformation from the relative who has inserted herself and is adding drama. But, if I am very honest with myself, it was his negativity that was the most wearing for me in the 24-7 caregiving. A dear friend who worked in geriatrics once told me that people do not change as they get old, they just get more of whatever they always were. My observations would support that. But, as they say in Alanon, I cannot take anyone else's inventory. I can only take mine, and I choose to see the beauty in my life. It is abundant. I have children with whom I can have heartfelt conversations. I see miracles in their lives. I see the beauty in my natural surroundings; in what I call my friends: the trees, the living water in the rushing creek. Today a good breakfast and a walk on the trail through the woods that I so love.
Once again, it depends upon where one focuses one's attention. Do we see beauty or do we see difficulties? Time spent with Dwane nowadays tends to be upsetting to me because of his negativity. It can cause me so much distress that I cannot sleep. He is having a worse time with negativity right now because he is discontent with being in assisted living, fueled by misinformation from the relative who has inserted herself and is adding drama. But, if I am very honest with myself, it was his negativity that was the most wearing for me in the 24-7 caregiving. A dear friend who worked in geriatrics once told me that people do not change as they get old, they just get more of whatever they always were. My observations would support that. But, as they say in Alanon, I cannot take anyone else's inventory. I can only take mine, and I choose to see the beauty in my life. It is abundant. I have children with whom I can have heartfelt conversations. I see miracles in their lives. I see the beauty in my natural surroundings; in what I call my friends: the trees, the living water in the rushing creek. Today a good breakfast and a walk on the trail through the woods that I so love.
Jun 17, 2012
Foundation for Caregiving?
"For years I would shelve my light to take care of others. When growing up, I had to check myself at the door like a coat in order to relate to others. Often, I had to pretend to be less than I was in order to be loved." Mark Nepo
I was struck by Nepo's poetic writing of how we are sometimes trained by our family of origin to diminish our light in order to not be a threat to others or to the family system. This type of training is a perfect backdrop for creating a caregiver. We might call it a perfect storm: a family system which trains people to diminish their own light and then a life situation which calls for someone to rescue someone else. A dear friend told me of a story, reportedly true, of Marlon Brando. It was told to me that Marlon Brando could consciously choose whether to be visible or not. He would practice getting on a bus, and he could diminish his light (his essence of himself) to such an extent that people did not recognize him; and conversely, he could get on a bus fully shining of himself, and be recognized and asked for autographs. To consciously choose whether or not to let our essence be seen is probably a good thing, but I think that those of us who end of being caregivers may not consciously choose whether to shine or not. I have noticed of myself when I am with people with whom I do not feel safe, that I dim down. I have sometimes thought to myself in astonishment: "Where did I go?!", noticing that I am not really, fully there any more. We could entertain that this is an out-of-body experience that accompanies post traumatic stress --- and we may not be wrong, as caregiving and all its ramifications is astonishingly stressful. But, that it is not always helpful to label something. Instead, I would suggest that we examine our motives and beliefs about being caregivers, that we have the courage to be really, really be honest with ourselves about our motives, and that we notice where and when we may not fully express the essence of who we are. It may be that we are wise to hide our light in some situations and with some people, but it seems to me that it is important that this be choice and not reaction.
I was struck by Nepo's poetic writing of how we are sometimes trained by our family of origin to diminish our light in order to not be a threat to others or to the family system. This type of training is a perfect backdrop for creating a caregiver. We might call it a perfect storm: a family system which trains people to diminish their own light and then a life situation which calls for someone to rescue someone else. A dear friend told me of a story, reportedly true, of Marlon Brando. It was told to me that Marlon Brando could consciously choose whether to be visible or not. He would practice getting on a bus, and he could diminish his light (his essence of himself) to such an extent that people did not recognize him; and conversely, he could get on a bus fully shining of himself, and be recognized and asked for autographs. To consciously choose whether or not to let our essence be seen is probably a good thing, but I think that those of us who end of being caregivers may not consciously choose whether to shine or not. I have noticed of myself when I am with people with whom I do not feel safe, that I dim down. I have sometimes thought to myself in astonishment: "Where did I go?!", noticing that I am not really, fully there any more. We could entertain that this is an out-of-body experience that accompanies post traumatic stress --- and we may not be wrong, as caregiving and all its ramifications is astonishingly stressful. But, that it is not always helpful to label something. Instead, I would suggest that we examine our motives and beliefs about being caregivers, that we have the courage to be really, really be honest with ourselves about our motives, and that we notice where and when we may not fully express the essence of who we are. It may be that we are wise to hide our light in some situations and with some people, but it seems to me that it is important that this be choice and not reaction.
Jun 16, 2012
Communication of truth
"The soul's communication of truth is the highest event in nature, since it then does not give somewhat from itself but it gives itself and becomes that man (I would add woman) whom it enlightens" Ralph Waldo Emerson
Emerson's writing is so lovely. I believe it is true that our souls communicate the truth to us, and that some people can become what I call 'great souls' by becoming the truth of what their souls have told them. I watched a documentary last night which featured Martin Luther King, Jr., Gandhi, Bishop Tutu, Mother Theresa -- all examples of people who seem to have risen above the mundane into the beyond: into truth in its universal form.
As caregivers for someone with dementia, we, too, can look to our souls for communication of the truth. We can discern what is true for us and what is true in our relationship with the care receiver. If we are able to know our ego well enough that it is not out front making our decisions, then we can trust that the decisions we make are the right ones. For us and for all others involved.
Emerson's writing is so lovely. I believe it is true that our souls communicate the truth to us, and that some people can become what I call 'great souls' by becoming the truth of what their souls have told them. I watched a documentary last night which featured Martin Luther King, Jr., Gandhi, Bishop Tutu, Mother Theresa -- all examples of people who seem to have risen above the mundane into the beyond: into truth in its universal form.
As caregivers for someone with dementia, we, too, can look to our souls for communication of the truth. We can discern what is true for us and what is true in our relationship with the care receiver. If we are able to know our ego well enough that it is not out front making our decisions, then we can trust that the decisions we make are the right ones. For us and for all others involved.
Jun 15, 2012
Long-term Care Costs
"According to a National Alliance for Caregiving/Evercare survey, the average out-of-pocket expense for caregivers is $5,531 a year." aarp.org/bulletin June 2012
That actually seems low to me, and it does not include lost wages. Which for some of us amounts to thousands of dollars a year. $60,000 to $100,000 perhaps. In a separate article in the same bulletin, they estimate that long-term care can cost as much as $80,000 a year. We are fortunate --- in my planning and against Dwane's opposition, to have purchased long-term care insurance long enough ago that it was affordable. With rising costs of end-care, long-term care insurance premiums have risen dramatically. "For people 55-65, prices of new policies are up an average of 30 to 50 percent compared with five years ago." aarp.org/bulletin June 2012. The author of the article, Jane Bryant Quinn, recommends that if a person can possibly afford it: to buy or renew long-term care insurance. It is too late to consider purchasing long-term care insurance for the person for whom you provide caregiving, but it is not too late for you to consider it for yourself. We are fortunate, in my buying long-term care insurance and in my careful stewardship of our financial resources, to provide for Dwane's care with our own money and resources. Sadly, when I am in assisted living facilities, it seems to me that it might - just might, make a difference in how the care receiver is treated -- whether the person is private pay or paid for through a government program (which pays less).
That actually seems low to me, and it does not include lost wages. Which for some of us amounts to thousands of dollars a year. $60,000 to $100,000 perhaps. In a separate article in the same bulletin, they estimate that long-term care can cost as much as $80,000 a year. We are fortunate --- in my planning and against Dwane's opposition, to have purchased long-term care insurance long enough ago that it was affordable. With rising costs of end-care, long-term care insurance premiums have risen dramatically. "For people 55-65, prices of new policies are up an average of 30 to 50 percent compared with five years ago." aarp.org/bulletin June 2012. The author of the article, Jane Bryant Quinn, recommends that if a person can possibly afford it: to buy or renew long-term care insurance. It is too late to consider purchasing long-term care insurance for the person for whom you provide caregiving, but it is not too late for you to consider it for yourself. We are fortunate, in my buying long-term care insurance and in my careful stewardship of our financial resources, to provide for Dwane's care with our own money and resources. Sadly, when I am in assisted living facilities, it seems to me that it might - just might, make a difference in how the care receiver is treated -- whether the person is private pay or paid for through a government program (which pays less).
Jun 14, 2012
Diminishing others
"Killing another human being seems abhorrent, but when have we extinguished hope, enthusiasm, opportunity, or love?" Jesse Jennings
It is an awesome responsibility for us to be aware of how we treat others. During my years of caregiving, I did a stellar job most of the time. One of the reasons for choosing to have him move into assisted living was because I was no longer able to do the job as cheerfully as I had in previous years/months. The stress of the overwhelming responsibility, coupled with dealing with his extreme negativity began to wear me down. One of the things that bothered me about the decision is that placing someone in assisted living does impact their hope. I still see him and take him to things that are important to him, but the dreams of what life once held are no longer valid or attainable -- for either of us.
It is an awesome responsibility for us to be aware of how we treat others. During my years of caregiving, I did a stellar job most of the time. One of the reasons for choosing to have him move into assisted living was because I was no longer able to do the job as cheerfully as I had in previous years/months. The stress of the overwhelming responsibility, coupled with dealing with his extreme negativity began to wear me down. One of the things that bothered me about the decision is that placing someone in assisted living does impact their hope. I still see him and take him to things that are important to him, but the dreams of what life once held are no longer valid or attainable -- for either of us.
Jun 13, 2012
Difficult Days
"We've got some difficult days ahead. But it doesn't really matter with me now, because I've been to the mountaintop." Martin Luther King, Jr.
It happens more than we might imagine or hope. When family members are in disagreement over the care needed for the person with dementia. The person for whom I am caregiver has enlisted another family member to 'get him out of there' (the accredited assisted living facility). This family member, who only one time in the last 19 years has made the effort to come see him and without contacting me for any information, has begun to insert herself into the situation. While it is important for elders - to include persons with dementia - to have avenues for advocacy, it is very sad when family members second guess, intrude and provoke.
It happens more than we might imagine or hope. When family members are in disagreement over the care needed for the person with dementia. The person for whom I am caregiver has enlisted another family member to 'get him out of there' (the accredited assisted living facility). This family member, who only one time in the last 19 years has made the effort to come see him and without contacting me for any information, has begun to insert herself into the situation. While it is important for elders - to include persons with dementia - to have avenues for advocacy, it is very sad when family members second guess, intrude and provoke.
Jun 12, 2012
Rough phase
"Life is a process. It's not really about doing and getting, but about being and knowing." Jesse Jennings
We have just gone through a very rough period with Dwane being strongly resistant to being in assisted living. Oddly, it was rough for me the first month that he was in assisted living, and then it has gotten better. For Dwane, it seems that the first couple days were rough, and then he was more accepting until the last couple weeks. Perhaps it is because we both were tempted to think that his being in assisted living would provide him the rest and support that he could get more 'on his feet' physically. Unrealistic of both of us. One of the hardest parts of Lewy Bodies Dementia, or at least his with it being frontal lobe, is his unawareness of his own functioning compromises. As Mayo Clinic neurologist told us: he is unable to see his own cognitive limitations. In the past few days he has called his sister to get him out of assisted living and called 911. He seemed frantic that he could not get ahold of me, and unable to figure out how to call my cell phone.
It is hard for me to see him so dissatisfied, but I also know he is now living in a setting where his needs are best met. I cannot do the 24/7 caregiving any longer. This blog today is just a reminder for us all that the difficulties do not go away just because we have chosen respite care - in whatever form. It is also a reminder that we have a spiritual obligation to get on with our own life.
We have just gone through a very rough period with Dwane being strongly resistant to being in assisted living. Oddly, it was rough for me the first month that he was in assisted living, and then it has gotten better. For Dwane, it seems that the first couple days were rough, and then he was more accepting until the last couple weeks. Perhaps it is because we both were tempted to think that his being in assisted living would provide him the rest and support that he could get more 'on his feet' physically. Unrealistic of both of us. One of the hardest parts of Lewy Bodies Dementia, or at least his with it being frontal lobe, is his unawareness of his own functioning compromises. As Mayo Clinic neurologist told us: he is unable to see his own cognitive limitations. In the past few days he has called his sister to get him out of assisted living and called 911. He seemed frantic that he could not get ahold of me, and unable to figure out how to call my cell phone.
It is hard for me to see him so dissatisfied, but I also know he is now living in a setting where his needs are best met. I cannot do the 24/7 caregiving any longer. This blog today is just a reminder for us all that the difficulties do not go away just because we have chosen respite care - in whatever form. It is also a reminder that we have a spiritual obligation to get on with our own life.
Jun 11, 2012
Joy
"As it's give me to perceive, I most certainly believe, when a man's glad plumb though, God's pleased with him, same as you." James Whitcomb Riley
I was coaching a woman earlier today about her wanting more joy in her life. It does seem reasonable to believe that what God wants for us is to be in joy. Joyous. That may be what Joseph Campbell meant when he recommended that we follow our bliss. Yet, those same great thinkers admit that life does have its ups and downs. The secret, perhaps, is to accept that and to not lash against it. When bad things happen, it is not personal. We live in a universe in which disappointments, disease and upset occur. Perhaps it is in accepting that, truly accepting that, that we are free to be in joy. Are you willing to join me in joy today?
I was coaching a woman earlier today about her wanting more joy in her life. It does seem reasonable to believe that what God wants for us is to be in joy. Joyous. That may be what Joseph Campbell meant when he recommended that we follow our bliss. Yet, those same great thinkers admit that life does have its ups and downs. The secret, perhaps, is to accept that and to not lash against it. When bad things happen, it is not personal. We live in a universe in which disappointments, disease and upset occur. Perhaps it is in accepting that, truly accepting that, that we are free to be in joy. Are you willing to join me in joy today?
Jun 10, 2012
Empathy
"Now I have no choice but to see with your eyes, So I am not alone, so you are not alone." Yannis Ritsos
Sometimes I try to imagine what it would be like to be the one with Lewy Bodies Dementia. I don't think any one of us can truly imagine: the frustrations, the fears, the limitations. It is two sides of the coin, really, that people with LBD still have their memories; because in some ways that seems to imprison them even more. When I go to visit the assisted living facility, I notice that the persons with significant memory issues sometimes seem content. Dare I say, perhaps oblivious, of their circumstances. No so with people with LBD. They are aware of their circumstances; not the full extent of their limitations -- but that seems to make acceptance of the support they need even harder to achieve. I strive to empathize, but I really cannot even imagine. Nor can he imagine what it is like for me, as caring caregiver.
Sometimes I try to imagine what it would be like to be the one with Lewy Bodies Dementia. I don't think any one of us can truly imagine: the frustrations, the fears, the limitations. It is two sides of the coin, really, that people with LBD still have their memories; because in some ways that seems to imprison them even more. When I go to visit the assisted living facility, I notice that the persons with significant memory issues sometimes seem content. Dare I say, perhaps oblivious, of their circumstances. No so with people with LBD. They are aware of their circumstances; not the full extent of their limitations -- but that seems to make acceptance of the support they need even harder to achieve. I strive to empathize, but I really cannot even imagine. Nor can he imagine what it is like for me, as caring caregiver.
Jun 9, 2012
Leaving Nothing But Our Smile
Cheshire Cat: Lose something?
Alice: [turns around to find just the Cat's smile talking to her - From Alice's Adventures in Wonderland
What if we left nothing but our smile as the effect of our interacting with other people? In grade school I played the part in the school play of the Cheshire Cat. It was always magical to me how the cat's body could disappear, leaving just his smile. Someone once said to me that my daughter was a person, who -- after she had left, the other people would realize they felt better for her having been there. Wouldn't it be nice if everyone left such an essence? We do have an impact on others, we do know that, don't we? Then, the fun part is: we get to choose what effect we are going to have. Positive or negative. It is our choice.
Alice: [turns around to find just the Cat's smile talking to her - From Alice's Adventures in Wonderland
What if we left nothing but our smile as the effect of our interacting with other people? In grade school I played the part in the school play of the Cheshire Cat. It was always magical to me how the cat's body could disappear, leaving just his smile. Someone once said to me that my daughter was a person, who -- after she had left, the other people would realize they felt better for her having been there. Wouldn't it be nice if everyone left such an essence? We do have an impact on others, we do know that, don't we? Then, the fun part is: we get to choose what effect we are going to have. Positive or negative. It is our choice.
Jun 8, 2012
Optimism
"You immediately have optimism when your life is touched by God." interview with Niall Ferguson
Would you rather be with someone who sees the best in things, is buoyant, and cheery? Or, do you like to be with people who complain, look for the worst to happen, and are downcast? It is hard for me to be around people who remind me of Eeyore, the donkey in the wonderful tales of Winnie-the-Pooh. One reason I like the works of both A. A. Milne and Charles M. Schulz is that they depict in their characters the many faces we see commonly in life: the bossy girl, the boy with self doubts, the exuberant tigger, the wise philosopher, the bear who cannot control his appetites, the girl who does not do what she says she will do, the donkey who only sees the worst of possibilities. A lot of wisdom in the unfolding of these characters. We can see both ourselves and others in our best and not-so-best times. I try to remember -has the care receiver always been a pessimist or has it come with the disease. I am not so sure that the disease causes attributes, but it certainly accentuates them. A wise friend of mine who worked in geriatrics once told me "People don't change when they get older; they just get more of what they always were." It seems the same is true during the process and progress of the disease of Lewy Bodies Dementia.
Would you rather be with someone who sees the best in things, is buoyant, and cheery? Or, do you like to be with people who complain, look for the worst to happen, and are downcast? It is hard for me to be around people who remind me of Eeyore, the donkey in the wonderful tales of Winnie-the-Pooh. One reason I like the works of both A. A. Milne and Charles M. Schulz is that they depict in their characters the many faces we see commonly in life: the bossy girl, the boy with self doubts, the exuberant tigger, the wise philosopher, the bear who cannot control his appetites, the girl who does not do what she says she will do, the donkey who only sees the worst of possibilities. A lot of wisdom in the unfolding of these characters. We can see both ourselves and others in our best and not-so-best times. I try to remember -has the care receiver always been a pessimist or has it come with the disease. I am not so sure that the disease causes attributes, but it certainly accentuates them. A wise friend of mine who worked in geriatrics once told me "People don't change when they get older; they just get more of what they always were." It seems the same is true during the process and progress of the disease of Lewy Bodies Dementia.
Jun 7, 2012
Jun 6, 2012
Jun 5, 2012
Physical therapy
"Maybe that's why I want to touch people so often --- it's only another way of talking." Georgia O'Keefe
Physical therapy involves touching people. I have taken Dwane to see the physical therapist for the last several weeks: to help with his stooping posture, to help him get out of bed independently, to help him get out of chairs on his own, and to do exercises which relief his back pain (caused by deteriorating lower discs for which he has had 3 surgeries). Justin, the PT, is a delightful young man who believes that he can help Dwane a lot. I hope so. My observations are that it is harder and harder for Dwane to get out of chairs and to walk truly upright. It will be wonderful if the physical therapy does help him remain active and independent.
Physical therapy involves touching people. I have taken Dwane to see the physical therapist for the last several weeks: to help with his stooping posture, to help him get out of bed independently, to help him get out of chairs on his own, and to do exercises which relief his back pain (caused by deteriorating lower discs for which he has had 3 surgeries). Justin, the PT, is a delightful young man who believes that he can help Dwane a lot. I hope so. My observations are that it is harder and harder for Dwane to get out of chairs and to walk truly upright. It will be wonderful if the physical therapy does help him remain active and independent.
Jun 4, 2012
What are we seeking?
"You are that which you are seeking," St. Francis
Could that really be true? So many of us humans think that we are seeking the other perfect complement to ourselves: our mate, our partner. And, life may very well be nicer if that person is in our life, but . . . . what if what we are really seeking is communion with ourselves? We can notice those around us who keep themselves so busy or numbed by addictions that it would not be possible to reach communion with themselves. And, our culture teaches us that we are not complete within ourselves; that we should be forever seeking the 'perfect' mate. It would seem true that we cannot be happy with anyone else, until we are happy with ourselves. I know a man who as a child filled in the blank in a classroom survey asking, who is your best friend: He wrote in: myself. Perhaps this child knew more than many of us as adults know about who we most need to be able to count upon. In what ways are you your own best friend?
Could that really be true? So many of us humans think that we are seeking the other perfect complement to ourselves: our mate, our partner. And, life may very well be nicer if that person is in our life, but . . . . what if what we are really seeking is communion with ourselves? We can notice those around us who keep themselves so busy or numbed by addictions that it would not be possible to reach communion with themselves. And, our culture teaches us that we are not complete within ourselves; that we should be forever seeking the 'perfect' mate. It would seem true that we cannot be happy with anyone else, until we are happy with ourselves. I know a man who as a child filled in the blank in a classroom survey asking, who is your best friend: He wrote in: myself. Perhaps this child knew more than many of us as adults know about who we most need to be able to count upon. In what ways are you your own best friend?
Jun 3, 2012
Trust
"We don't let go into trust until we've exhausted our egos." Rob Lehman
Trust. In my psychological practice, as well as when I do life coaching, clients often present with trust issues. Who among us in the human race does not have trust issues? After all, we were all raised by fallible and imperfect parents who did not always meet every possible need we had. In reaction to those unmet needs, we sometimes bolster our egos, which is exactly the wrong thing to do. We need, instead, to quiet our egos in order for trust to find a foothold in our souls. Ego does not want us to do that, because then ego is dethroned; but, if we are to become fully developed human beings, ego must be sacrificed. For trust to flourish, we must be willing to extinguish ego.
Trust. In my psychological practice, as well as when I do life coaching, clients often present with trust issues. Who among us in the human race does not have trust issues? After all, we were all raised by fallible and imperfect parents who did not always meet every possible need we had. In reaction to those unmet needs, we sometimes bolster our egos, which is exactly the wrong thing to do. We need, instead, to quiet our egos in order for trust to find a foothold in our souls. Ego does not want us to do that, because then ego is dethroned; but, if we are to become fully developed human beings, ego must be sacrificed. For trust to flourish, we must be willing to extinguish ego.
Jun 2, 2012
Eating utensils
"Throughout all the ten regions of the Universe, there is no place where the Source is not." Hakuin
Comforting thought. When I spend the day with Dwane and he is filled with litanies of complaints, I remember that Source or God or Higher Power is there -- in that facility -- too. The OT (occupational therapist) I made the appointment with and drove Dwane to had a good suggestion about eating utensils. Perhaps readers of this blog will already know about weighted handles on eating utensils. It helps someone with the tremors of Lewy Bodies Dementia have better control in getting the food off the plate and into the mouth. I thought I would have to buy them online, but we stopped at the home health equipment store to get Dwane some bigger compression socks (his feet and ankles continue to swell with fluid), and lo and behold, they had the utensils. And, less expensive that the list the OT had given me for online purchase. When eating lunch with Dwane recently, I noticed that he and a woman at our table had a lot of trouble getting food onto their spoon or fork, and then getting that food into their mouth. I am hoping these weighted handled fork and spoon will help.
Comforting thought. When I spend the day with Dwane and he is filled with litanies of complaints, I remember that Source or God or Higher Power is there -- in that facility -- too. The OT (occupational therapist) I made the appointment with and drove Dwane to had a good suggestion about eating utensils. Perhaps readers of this blog will already know about weighted handles on eating utensils. It helps someone with the tremors of Lewy Bodies Dementia have better control in getting the food off the plate and into the mouth. I thought I would have to buy them online, but we stopped at the home health equipment store to get Dwane some bigger compression socks (his feet and ankles continue to swell with fluid), and lo and behold, they had the utensils. And, less expensive that the list the OT had given me for online purchase. When eating lunch with Dwane recently, I noticed that he and a woman at our table had a lot of trouble getting food onto their spoon or fork, and then getting that food into their mouth. I am hoping these weighted handled fork and spoon will help.
Jun 1, 2012
Sacrifice
"the working definition of sacrifice -- giving up with reverence and compassion what no longer works in order to stay close to what is sacred." Mark Nepo
It seems that a number of times in my life I have been called to give up what is familiar in order to stay true to my spiritual path. That even applies, I think, to caregiving. I did it well, and with dedication and love for five years, and I am done. I have given it up. I have sacrificed it with reverence and compassion in order to stay true to my own path; and I know, that if I did not sacrifice the role of caregiving, I would sacrifice my entire self.
That does not mean I do not still advocate for and see Dwane, even when all he does is complain: about the food, about the noise of the staff, about the problematic other resident, about his furniture that he wants to still use, about not putting flowers on a grave on Memorial Day, about not being able to see as well as he would like, about "this place". I, too, am sorry our lives have come to this point, BUT I can no longer smooth the way for him. He has to adjust to his new living situation. Or not. That is his choice. But, my choice is to follow my own path, and to do so, I sacrifice the role of caregiving -- in the symbolic sense.
It seems that a number of times in my life I have been called to give up what is familiar in order to stay true to my spiritual path. That even applies, I think, to caregiving. I did it well, and with dedication and love for five years, and I am done. I have given it up. I have sacrificed it with reverence and compassion in order to stay true to my own path; and I know, that if I did not sacrifice the role of caregiving, I would sacrifice my entire self.
That does not mean I do not still advocate for and see Dwane, even when all he does is complain: about the food, about the noise of the staff, about the problematic other resident, about his furniture that he wants to still use, about not putting flowers on a grave on Memorial Day, about not being able to see as well as he would like, about "this place". I, too, am sorry our lives have come to this point, BUT I can no longer smooth the way for him. He has to adjust to his new living situation. Or not. That is his choice. But, my choice is to follow my own path, and to do so, I sacrifice the role of caregiving -- in the symbolic sense.
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