"I have the right: To get angry, be depressed and express other difficult emotions occasionally." Jo Horne's - Caregiver's Bill of Rights.
Let's be honest: Caregiving for someone with dementia is challenging; beyond the capacity for humans to always be understanding, patient, mellow. We will get angry. We will feel depressed, overwhelmed, under appreciated, over taxed, impatient. And, that is okay. It is more than okay; it is healthy. Feelings are neither good nor bad; it is how we express them that makes the difference. It is not only bad style, it is immature and nonproductive, to yell or use foul language at the care receiver. Some disciplines advocate yelling into a pillow or some such technique -- scream therapy. I am not sure that it is therapeutic. Sometimes mad just brings on more mad. But, we will be impatient and frustrated; and that is really okay --- as long as it is a minor percentage of the time. If we are feeling negative feelings more than just a very minor percentage of the time, it is not good for our own mental health nor the health of those around us. In that case, seek professional help. But, for occasional mood upsets, let us just be gentle with ourselves. This is an almost-impossible task; this caregiving.
Happy Halloween. I hope yours is spooktacular -- full of only very good things.
Oct 31, 2011
Oct 30, 2011
Maintain my own life
"I have the right: To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy." Jo Horne's Caregiver's Bill of Rights
This is a good one for me to remember. Before the dementia, Dwane and I led very different professional lives. I put aside my psychological practice, to a large degree, to provide care for him. Before the dementia, I went to workshops, conferences, and to see my own children - on my own. I must not let him make me feel guilty (number 5 of the Bill of Rights) for doing so now. I have a right to my own life. My only real responsibility to Dwane is to see that he is safe and has the best quality of life possible under the circumstances.
Today I fully reclaim my right to my own life -- separate from being a caregiver.
This is a good one for me to remember. Before the dementia, Dwane and I led very different professional lives. I put aside my psychological practice, to a large degree, to provide care for him. Before the dementia, I went to workshops, conferences, and to see my own children - on my own. I must not let him make me feel guilty (number 5 of the Bill of Rights) for doing so now. I have a right to my own life. My only real responsibility to Dwane is to see that he is safe and has the best quality of life possible under the circumstances.
Today I fully reclaim my right to my own life -- separate from being a caregiver.
Oct 29, 2011
Seek help from others
"I have the right: To seek help from others even though my loved one may object. I recognize the limits of my own endurance and strength." Jo Horne's Caregiver's Bill of Rights.
This is probably the area of greatest stress for me in caregiving: Dwane's resistance to having someone else come in so that I can have a break. In some ways I can understand it from his perspective, and yet, it seems so selfish of him to expect that I will be here. It puzzles me that he does not seem to acknowledge that I am not the one with dementia; that I have a right to a life of my own. Certainly, if our situations were reversed, I am fairly confident that he would not devote himself to my care.
So, I vow that I will have the breaks I need, while also providing for him the safety he needs. At least once a month I will have an overnight or two or three -- to get a break from this 24/7 stressful role of caregiving.
This is probably the area of greatest stress for me in caregiving: Dwane's resistance to having someone else come in so that I can have a break. In some ways I can understand it from his perspective, and yet, it seems so selfish of him to expect that I will be here. It puzzles me that he does not seem to acknowledge that I am not the one with dementia; that I have a right to a life of my own. Certainly, if our situations were reversed, I am fairly confident that he would not devote himself to my care.
So, I vow that I will have the breaks I need, while also providing for him the safety he needs. At least once a month I will have an overnight or two or three -- to get a break from this 24/7 stressful role of caregiving.
Oct 28, 2011
Caregiver's Bill of Rights
"I have the right: To take care of myself. This is not an act of selfishness. It will enable me to take better care of my loved one."
A friend sent me the Caregiver's Bill of Rights, taken from Caregiving: Helping an Aging Loved One, by Jo Horne. I have not read the book, but I love the Bill of Rights. My friend recommended I post them and review them daily, and I think I will. I have found in recent weeks some indications that the stress of this caregiving is affecting my own health, and I cannot allow that. So, I will put a high priority on taking care of myself. This friend uses the analogy of putting the oxygen mask first on oneself -- like told to do in an airplane. So, I put my own oxygen mask on (take care of myself foremost), and then I meet the needs of the person for whom I provide care.
I will cover the other "Rights" in subsequent blogs.
A friend sent me the Caregiver's Bill of Rights, taken from Caregiving: Helping an Aging Loved One, by Jo Horne. I have not read the book, but I love the Bill of Rights. My friend recommended I post them and review them daily, and I think I will. I have found in recent weeks some indications that the stress of this caregiving is affecting my own health, and I cannot allow that. So, I will put a high priority on taking care of myself. This friend uses the analogy of putting the oxygen mask first on oneself -- like told to do in an airplane. So, I put my own oxygen mask on (take care of myself foremost), and then I meet the needs of the person for whom I provide care.
I will cover the other "Rights" in subsequent blogs.
Oct 27, 2011
Acts of kindess
"Positive activity interventions - such as performing acts of kindness, counting one's blessings, and writing letters of gratitude - reverse apathy." Journal of Alternative and Complementary Medicine.
"A simple and non-psychopharmacological way to deal with depression: random acts of kindness. The study in the above journal found that depressed people found contentment by doing these simple things. Let us not forget to extend those random acts of kindness toward ourselves. It can be very hard being a caregiver for dementia; that is true, but it is equally true - in my opinion - that we can find blessings within the situation too. Today Dwane shared with me an interesting story that he was reading in the newspaper which I had missed. A blessing: both the sharing and the information. What blessing can you see today in your world?
"A simple and non-psychopharmacological way to deal with depression: random acts of kindness. The study in the above journal found that depressed people found contentment by doing these simple things. Let us not forget to extend those random acts of kindness toward ourselves. It can be very hard being a caregiver for dementia; that is true, but it is equally true - in my opinion - that we can find blessings within the situation too. Today Dwane shared with me an interesting story that he was reading in the newspaper which I had missed. A blessing: both the sharing and the information. What blessing can you see today in your world?
Oct 26, 2011
Mutual benefit
"The better we all do, the better we all do." Liga Masiva coffee label.
Oprah magazine feature the above organic coffee as a "local hero". Emily Kerr is helping Dominican Republic farmers sell their coffee directly under this label. I have ordered some to give it a try. And, I like the label quoted above. I really believe that the better we all do; the better we all do. There is plenty of goodness to go around, and if we promote it for ourselves and others, there is even more. There are probably some of you who are thinking: what about the horrific news and evidence of tragedy? And, those events are presented to us seemingly daily; but it is my opinion that we do much better focusing on what is going right in the world. The kindness of my neighbor sharing her garden produce and giving us a ride to pick up a vehicle from the garage. The gathering of women yesterday who gathered just to acknowledge and support each other. What random act of kindness can you perform or see today?
Oprah magazine feature the above organic coffee as a "local hero". Emily Kerr is helping Dominican Republic farmers sell their coffee directly under this label. I have ordered some to give it a try. And, I like the label quoted above. I really believe that the better we all do; the better we all do. There is plenty of goodness to go around, and if we promote it for ourselves and others, there is even more. There are probably some of you who are thinking: what about the horrific news and evidence of tragedy? And, those events are presented to us seemingly daily; but it is my opinion that we do much better focusing on what is going right in the world. The kindness of my neighbor sharing her garden produce and giving us a ride to pick up a vehicle from the garage. The gathering of women yesterday who gathered just to acknowledge and support each other. What random act of kindness can you perform or see today?
Oct 25, 2011
Breathe
"If I had to limit my advice on healthier living to just one tip, it would be to learn to breathe correctly." Dr. Andrew Weil.
How could we forget something as natural as breathing? Stress alters our natural breathing patterns; causing us to breathe 15-20 times per minute, instead of the more optimal 5 times per minute. Shallow, rapid breathing causes our bodies to think we are in 'fight/flight' mode, and stress hormones flood our bodies. So, as dementia caregivers, one of the ways we can counteract the damage of the stress we encounter in our roles, is to breathe: deeply and slowly. Let us stop several times during the day and notice our breathing. Let us slow it down. Breathe in 1, 2, 3, 4 and out 1, 2, 3, 4. An easy way to assist our bodies toward wellness.
How could we forget something as natural as breathing? Stress alters our natural breathing patterns; causing us to breathe 15-20 times per minute, instead of the more optimal 5 times per minute. Shallow, rapid breathing causes our bodies to think we are in 'fight/flight' mode, and stress hormones flood our bodies. So, as dementia caregivers, one of the ways we can counteract the damage of the stress we encounter in our roles, is to breathe: deeply and slowly. Let us stop several times during the day and notice our breathing. Let us slow it down. Breathe in 1, 2, 3, 4 and out 1, 2, 3, 4. An easy way to assist our bodies toward wellness.
Oct 24, 2011
Equal human dignity
"In the middle of the next big crisis, I'm cutting my hair. Believe me, we won't be reading about what war is going on." Hillary Clinton.
A sad commentary on the way women are objectified in the media, as noted in yesterday's writing of the documentary, Miss Representation. Has a man ever had the physical scrutiny and criticism of media like women often get? I remember Bill Clinton and John Edwards being criticized for the price of their hair cuts, but not for the style. Most dementia caregivers statistically are women. Let us, as women, (and you too men) model treating all humans with respect and dignity. It is critical for the well being of us all.
A sad commentary on the way women are objectified in the media, as noted in yesterday's writing of the documentary, Miss Representation. Has a man ever had the physical scrutiny and criticism of media like women often get? I remember Bill Clinton and John Edwards being criticized for the price of their hair cuts, but not for the style. Most dementia caregivers statistically are women. Let us, as women, (and you too men) model treating all humans with respect and dignity. It is critical for the well being of us all.
Oct 23, 2011
Emotions
"Emotions are among the most valuable teacher as long as we don't try to use them to validate our position and make ourselves right." Dr. Joan Borysenko.
As Dr. Borysenko says, if we never experienced anger, we would not know when our boundaries had been violated. And, if we never experienced jealousy, we would have little motivation to cultivate happiness at other's good fortune. Our emotions are invaluable in helping us interact with our worlds more effectively. And, I think there is truth in the premise that if one cannot allow the experience of what we might call negative emotions, then that person is also limiting the extent he/she feels what we might call positive emotions. So, today let us rejoice in our ability to feel emotions. Let us notice what irritates (a lesser form of anger) or angers us or makes us sad. Let us learn and mature by honoring what our emotions are telling us about ourselves.
As Dr. Borysenko says, if we never experienced anger, we would not know when our boundaries had been violated. And, if we never experienced jealousy, we would have little motivation to cultivate happiness at other's good fortune. Our emotions are invaluable in helping us interact with our worlds more effectively. And, I think there is truth in the premise that if one cannot allow the experience of what we might call negative emotions, then that person is also limiting the extent he/she feels what we might call positive emotions. So, today let us rejoice in our ability to feel emotions. Let us notice what irritates (a lesser form of anger) or angers us or makes us sad. Let us learn and mature by honoring what our emotions are telling us about ourselves.
Oct 22, 2011
Miss Representation
"When the documentary Miss Representation premiered at the 2011 Sundance Film Festival, audiences were riveted and OWN: Oprah Winfrey Network acquired its broadcast rights.The film explores how the media’s misrepresentation of women has led to the underrepresentation of women in positions of power and influence." Miss Representation website http://missrepresentation.org
Last night we watched the above noted film. Riveting. I am of the era of the ERA and Women's Right Movement. I had as a priority raising my children (a boy and a girl) with the attitude of human dignity for all. Marlo Thomas's Free to Be You and Me was a favorite in our home. It was so important to me that my children grew up respecting themselves and others and to develop to their own potential. This blog is not about touting women's rights (which are really everyone's rights), but it does seem to me that we who are caregivers for dementia might dedicate some of our energies to the respectful treatment of all. Don't we do that everyday in the way we treat and model how others are to treat the person with dementia? Let us not forget about ourselves and the treatment we deserve. Let us be sure to treat ourselves with the utmost respect and to tolerate only that from others. If interested, you can lend your voice to offset the dehumanizing and violent images to which our youth are currently exposed. I was motivated to contact my state congressional people.
Last night we watched the above noted film. Riveting. I am of the era of the ERA and Women's Right Movement. I had as a priority raising my children (a boy and a girl) with the attitude of human dignity for all. Marlo Thomas's Free to Be You and Me was a favorite in our home. It was so important to me that my children grew up respecting themselves and others and to develop to their own potential. This blog is not about touting women's rights (which are really everyone's rights), but it does seem to me that we who are caregivers for dementia might dedicate some of our energies to the respectful treatment of all. Don't we do that everyday in the way we treat and model how others are to treat the person with dementia? Let us not forget about ourselves and the treatment we deserve. Let us be sure to treat ourselves with the utmost respect and to tolerate only that from others. If interested, you can lend your voice to offset the dehumanizing and violent images to which our youth are currently exposed. I was motivated to contact my state congressional people.
Oct 21, 2011
Happiness
"90% of happiness is contentment; 10% is joy," Dan Buettner author of Thrive: Finding Happiness the Blue Zone's Way.
Driving home yesterday I was listening to NPR's interview of author, Dan Buettner. Interesting. He said that 40% of happiness comes from one's genes, 15% from chance (like being born with a disability), and 40% from choice. (I don't know what happened to the other 5%?!) He also said that people need to experience tolerance, trust, social interaction (6-7 hours each day!), recreation and access to green spaces to support their being happy.
As dementia caregivers it may very well be difficult to get 6-7 hours each day of social interaction (he said it had to be face-to-face - not media), but surely we can get some social interaction; and we have a lot of control over the 40% that is choice. What aspect of your life today can you focus upon to support your happiness? For me, it is a couple of delightful and supportive phone calls, a walk in the lovely autumn air, and a good dinner with local produce (love those farmer's markets!!) to look forward to this evening.
Driving home yesterday I was listening to NPR's interview of author, Dan Buettner. Interesting. He said that 40% of happiness comes from one's genes, 15% from chance (like being born with a disability), and 40% from choice. (I don't know what happened to the other 5%?!) He also said that people need to experience tolerance, trust, social interaction (6-7 hours each day!), recreation and access to green spaces to support their being happy.
As dementia caregivers it may very well be difficult to get 6-7 hours each day of social interaction (he said it had to be face-to-face - not media), but surely we can get some social interaction; and we have a lot of control over the 40% that is choice. What aspect of your life today can you focus upon to support your happiness? For me, it is a couple of delightful and supportive phone calls, a walk in the lovely autumn air, and a good dinner with local produce (love those farmer's markets!!) to look forward to this evening.
Oct 20, 2011
Other's effect on us
"Sometimes it seems like others have the power to negatively affect your experience, but that is not true." Abraham.
A very interesting thought. To be so self-contained that one is impervious to the actions, words or attitudes of others. I am quite certain that you, as caregivers, get feedback (solicited or not) on what you should be doing and how to be doing it. It is human to think that someone's negative behavior has something to do with us personally; but, consider this: it does not. Most times when people are rude, it has everything to do with something about them and very little or nothing to do with us. That does not include the times we may have actually offended someone, but - usually - their mood is their own sorting out. So, as caregivers let us be solid in our own grounding, our own integrity, and let us remain unaffected by what seems negative from others.
Welcome new readers. I have learned that a dear friend from a past chapter in my life has provided this blog as a program to her women's group. Welcome. Social support is an integral part of one's happiness and well being, especially when one is encountering difficulties in one's life. And, who doesn't experience difficulty in life some times?
A very interesting thought. To be so self-contained that one is impervious to the actions, words or attitudes of others. I am quite certain that you, as caregivers, get feedback (solicited or not) on what you should be doing and how to be doing it. It is human to think that someone's negative behavior has something to do with us personally; but, consider this: it does not. Most times when people are rude, it has everything to do with something about them and very little or nothing to do with us. That does not include the times we may have actually offended someone, but - usually - their mood is their own sorting out. So, as caregivers let us be solid in our own grounding, our own integrity, and let us remain unaffected by what seems negative from others.
Welcome new readers. I have learned that a dear friend from a past chapter in my life has provided this blog as a program to her women's group. Welcome. Social support is an integral part of one's happiness and well being, especially when one is encountering difficulties in one's life. And, who doesn't experience difficulty in life some times?
Oct 19, 2011
Feelings
"The notion that our feelings are some kind of sacred cow that merits special honor is one of the greatest embarrassments of the self-help movement. If expressing your feelings generally makes you or other people feel worse -- doing harm -- try thinking about feelings as teachers, rather than as judges about how the world is treating you." Dr. Joan Borysenko.
Feelings are important; neither good nor bad - social skills curriculums teach; and that might very well be true. But, as Dr. Borysenko points out, acting on or expressing our feelings can cause harm to ourselves and others. As dementia caregivers we probably have many feelings - self pity, overwhelmed, anxious, contentment - among others; and these feelings can teach us how we are doing -- a very important service. We don't have to speak our feelings or act them out, but they can be guides for us on how well we are handling life and the role of caregiver. What do your feelings tell you today?
Feelings are important; neither good nor bad - social skills curriculums teach; and that might very well be true. But, as Dr. Borysenko points out, acting on or expressing our feelings can cause harm to ourselves and others. As dementia caregivers we probably have many feelings - self pity, overwhelmed, anxious, contentment - among others; and these feelings can teach us how we are doing -- a very important service. We don't have to speak our feelings or act them out, but they can be guides for us on how well we are handling life and the role of caregiver. What do your feelings tell you today?
Oct 18, 2011
Great respite
"Your time is limited, so don't waste it living someone else's life. Don't be trapped by dogma — which is living with the results of other people's thinking. Don't let the noise of others' opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition."
Steve Jobs
I am back and refreshed from a great respite, only part of four days, but -- they were worry free. I knew my sister would have things nicely in hand while I was gone, and today when she left, Dwane actually said to her, "Let's do this again sometime." How wonderful. They both had fun; and so did I. I got to see my grandson run his best cross country race to date. Just a delight to see him do so well. My daughter is a great travel companion, and it was so good to see my son and his family. The wonderful energy of a city. Such a contrast from my daily life. Let us be sure as caregivers to follow our own heart and intuition, AND to arrange worry-free breaks for ourselves.
Steve Jobs
I am back and refreshed from a great respite, only part of four days, but -- they were worry free. I knew my sister would have things nicely in hand while I was gone, and today when she left, Dwane actually said to her, "Let's do this again sometime." How wonderful. They both had fun; and so did I. I got to see my grandson run his best cross country race to date. Just a delight to see him do so well. My daughter is a great travel companion, and it was so good to see my son and his family. The wonderful energy of a city. Such a contrast from my daily life. Let us be sure as caregivers to follow our own heart and intuition, AND to arrange worry-free breaks for ourselves.
Oct 17, 2011
Simplicity
"I believe a leaf of grass is no less than the journey-work of the stars." ~Walt Whitman
What a good reminder of the beauty in simplicity to compare a leaf of grass with the heavens. It is a good reminder for us who are caregivers to notice the beauty in the simple and seemingly small things in our lives. Like Dwane knowing the odd sound of the engine might be low oil. What a lovely event. He probably saved us from significant damage to the engine. A kind neighbor picked me up at the garage and gave me a ride home. A small act reflective of the kindness of humanity. We are having roast with garden-fresh vegetables for dinner. One meal which can be a cause of gratitude for the abundance of good and nutritious food. A meaningful and connecting conversation with my daughter; an example of the goodness in nurturing relationships and communication. What in your life today is reflective of a greater beauty and goodness?
What a good reminder of the beauty in simplicity to compare a leaf of grass with the heavens. It is a good reminder for us who are caregivers to notice the beauty in the simple and seemingly small things in our lives. Like Dwane knowing the odd sound of the engine might be low oil. What a lovely event. He probably saved us from significant damage to the engine. A kind neighbor picked me up at the garage and gave me a ride home. A small act reflective of the kindness of humanity. We are having roast with garden-fresh vegetables for dinner. One meal which can be a cause of gratitude for the abundance of good and nutritious food. A meaningful and connecting conversation with my daughter; an example of the goodness in nurturing relationships and communication. What in your life today is reflective of a greater beauty and goodness?
Oct 16, 2011
Patience
"Adopt the pace of nature: her secret is patience." ~Ralph Waldo Emerson
Ahhh, Patience. Something we need in the role of dementia caregivers, and something which is not always at ready supply. I have read Dr. Joan Borysenko's comments on patience and her observation that what most of us call patience is impatience stretched to its maximum limits. And, on a tape of Eckart Tolle, he once commented that if one has to wait in line to just be enjoying oneself, rather than be impatient at the waiting. Tall order! I have noticed that I am more patient when I am feeling content myself; that means, not stressed, not overloaded, not overly tired or hungry. So, we are back to taking care of ourselves as a top priority. If patience is a needed quality for a caregiver, then let us start with being patient with ourselves! Then, let us make sure we are taking good care of ourselves.
Ahhh, Patience. Something we need in the role of dementia caregivers, and something which is not always at ready supply. I have read Dr. Joan Borysenko's comments on patience and her observation that what most of us call patience is impatience stretched to its maximum limits. And, on a tape of Eckart Tolle, he once commented that if one has to wait in line to just be enjoying oneself, rather than be impatient at the waiting. Tall order! I have noticed that I am more patient when I am feeling content myself; that means, not stressed, not overloaded, not overly tired or hungry. So, we are back to taking care of ourselves as a top priority. If patience is a needed quality for a caregiver, then let us start with being patient with ourselves! Then, let us make sure we are taking good care of ourselves.
Oct 15, 2011
Baffling
“Life only demands from you the strength you possess. Only one feat is possible: not to have run away.” Dag Hammarskjold
In AA (Alcoholics Anonymous) they say that alcoholism is a baffling disease. So is dementia. Day to day and moment to moment can be so different. Last night he was unable to remember how to use the remote for the tv, and today it was he who figured out that the odd noise in one of our vehicles might be caused by low oil. Amazing!!! It is no wonder that we as caregivers might vacillate among the choices for support and settings. One day there is good functioning, and the next day or moment there is not. One moment he reasons very well, and another one he uses such poor judgment that he endangers himself. It must be confusing for the person with dementia, as it is for those of us who are caregivers. So, what do we do? Perhaps as Dag Hammarskjold said, we are called to just not run away, but to grapple instead with the baffling inconsistencies of living with dementia.
Oct 14, 2011
I'm off
"The poetry of the earth is never dead." ~John Keats
Well, today I am off for my mini vacation. I am so grateful to my sister for coming to give me a worry-free break. I know all will be well in her capable hands. And I, I get to frolic with my children and grandson, eat at a great restaurant, and see a good play. The energy of the city compared with the solitude that is our chosen daily fare. Both energize me. I am so excited. I am even taking a break from the daily writing of this blog, by writing in advance for the days I am gone. To have something to look forward to is so important for us who are caregivers for dementia. What I have looked forward to has arrived. I have read that some people begin planning the next thing to look forward to as soon as the current one has ended. Good advice. What is your next thing you look forward to?
Oct 13, 2011
Consider your limits
"Give as you can but know your limits. Stop periodically and think about your giving. Are you feeling pleasure in your efforts?" Lynn Eldridge, M.D.
A friend sent me a link to caregiving tips aimed at supporting people providing care to someone with cancer, but the tips are helpful to caregivers for dementia too. I think the above tip is especially important. I know this summer I have had some times when I was not feeling pleasure in my efforts. I think that is inevitable, but also detrimental to our health and the situation of caregiving. So, when we feel loss of pleasure in our efforts at giving in this caregiver capacity, let us stop, reconsider, and implement a new plan. Whether that new plan means a change in setting for the care receiver, or more support coming in to relieve us, or a change in our own attitude: change is called for. Let us who have chosen (or feel we have had forced upon us) to provide caregiving, self monitor to ensure that we are not giving in resentment, but in peace and well being. The link for the rest of the article is:
A friend sent me a link to caregiving tips aimed at supporting people providing care to someone with cancer, but the tips are helpful to caregivers for dementia too. I think the above tip is especially important. I know this summer I have had some times when I was not feeling pleasure in my efforts. I think that is inevitable, but also detrimental to our health and the situation of caregiving. So, when we feel loss of pleasure in our efforts at giving in this caregiver capacity, let us stop, reconsider, and implement a new plan. Whether that new plan means a change in setting for the care receiver, or more support coming in to relieve us, or a change in our own attitude: change is called for. Let us who have chosen (or feel we have had forced upon us) to provide caregiving, self monitor to ensure that we are not giving in resentment, but in peace and well being. The link for the rest of the article is:
Oct 12, 2011
Kindness versus people pleasing
"Until we have developed self-respect and the humility that arises from authentic inner security, we are likely to feel guilty if we fail to please people, even when pleasing them would be harmful in some way." Dr. Joan Borysenko
The above quote is something I try to remember in caregiving. Lots of what Dwane would like, could be harmful to him. Such as riding his motorcycle. He could not get it running this summer, and I was greatly relieved because it would be potentially disasterous if he should try to ride it. We might want to think about the care receiver's preference versus harm when we consider what is the best placement for them to be in also. Most people want to stay in their own home. Who can blame them? But, there may come a time when the caregiving you provide along with the support you have created is simply not enough. Then, I think we need to muster the respect for self and other and act out of true kindness: in implementing what is the best setting for safety and well being
The above quote is something I try to remember in caregiving. Lots of what Dwane would like, could be harmful to him. Such as riding his motorcycle. He could not get it running this summer, and I was greatly relieved because it would be potentially disasterous if he should try to ride it. We might want to think about the care receiver's preference versus harm when we consider what is the best placement for them to be in also. Most people want to stay in their own home. Who can blame them? But, there may come a time when the caregiving you provide along with the support you have created is simply not enough. Then, I think we need to muster the respect for self and other and act out of true kindness: in implementing what is the best setting for safety and well being
Oct 11, 2011
Cheering each other on
"I only went out for a walk and finally concluded to stay out till sundown, for
going out, I found, was really going in." ~John Muir
We have the most exquisite blue sky where I live. I read of research which indicates that SADS (Seasonal Affective Disorder) is more likely caused by lack of blue sky than by lack of sun. Regardless, the blue sky background for the dark green of the evergreen trees is just breathtaking. I had a long walk today. Dwane was involved in an activity I deemed to be safe, so I went longer than usual. I had the thrill of hearing geese honking, as they travel south for the winter. What a lovely, haunting sound. I wondered at the effort of honking while also flying, and my daughter told me of a lovely thought: the geese are cheering each other on! I choose to believe this is true, and that is what I would like from this blog -- that we who are caregivers or anyone dealing with a life difficulty are cheering each other on: by reading and sharing good ideas, by caring, and by supporting each other. Let us follow the good example of the geese and cheer each other on.
We have the most exquisite blue sky where I live. I read of research which indicates that SADS (Seasonal Affective Disorder) is more likely caused by lack of blue sky than by lack of sun. Regardless, the blue sky background for the dark green of the evergreen trees is just breathtaking. I had a long walk today. Dwane was involved in an activity I deemed to be safe, so I went longer than usual. I had the thrill of hearing geese honking, as they travel south for the winter. What a lovely, haunting sound. I wondered at the effort of honking while also flying, and my daughter told me of a lovely thought: the geese are cheering each other on! I choose to believe this is true, and that is what I would like from this blog -- that we who are caregivers or anyone dealing with a life difficulty are cheering each other on: by reading and sharing good ideas, by caring, and by supporting each other. Let us follow the good example of the geese and cheer each other on.
Oct 10, 2011
Steve Jobs
"All I ever wanted to do was make a dent in the universe," Steve Jobs.
My computer was down the day I learned that Steve Jobs had died (heavy cloud cover prevented satellite reception). I was surprised how much loss I felt because I do not personally own an Apple product, but I was touched by the passing of such a brilliant mind. I'm sure we have all heard it said that, if we want to know how much we will be missed; just put your finger in a glass of water, pull it out, and see what impression your finger left. Well, the passing of Steve Jobs has made me realize how untrue that adage is. We do make an impression on our worlds: either positive or negative. I don't think we can be neutral. So, perhaps we need to choose wisely what impact we want to make. Although most of us will not have the impact of Steve Jobs on the world, we can affect our own little worlds, the person for whom we provide care, and the people with whom we associate. Today notice: is your influence positive or negative?
Kathy, thank you for your comments and your calling to my attention that sudden behavior change can be the result of illness. I will investigate that possibility. I appreciate your thoughtfulness and your taking the time to comment.
My computer was down the day I learned that Steve Jobs had died (heavy cloud cover prevented satellite reception). I was surprised how much loss I felt because I do not personally own an Apple product, but I was touched by the passing of such a brilliant mind. I'm sure we have all heard it said that, if we want to know how much we will be missed; just put your finger in a glass of water, pull it out, and see what impression your finger left. Well, the passing of Steve Jobs has made me realize how untrue that adage is. We do make an impression on our worlds: either positive or negative. I don't think we can be neutral. So, perhaps we need to choose wisely what impact we want to make. Although most of us will not have the impact of Steve Jobs on the world, we can affect our own little worlds, the person for whom we provide care, and the people with whom we associate. Today notice: is your influence positive or negative?
Kathy, thank you for your comments and your calling to my attention that sudden behavior change can be the result of illness. I will investigate that possibility. I appreciate your thoughtfulness and your taking the time to comment.
Oct 9, 2011
Hope for the best
“Hope for the best, prepare for the worst.” His Excellency
the Fourteenth Dalai Lama
Just when I thought Dwane had accepted my sister (God bless her!) coming to stay with him when I am gone next week, yesterday morning he had a major meltdown. Complained that he did not need a babysitter. Ironically, this is the same week that he nearly had a vehicle accident (doctor has told him twice that he is no longer to drive) and fell using poor judgment and a ladder. So, I prepared well in advance, even got someone to come in that he enjoyed (he had said the person would probably be Jack the Ripper - when he chose the option of someone coming in), and I let him choose which option of coverage he wanted. And, still the behavioral backlash. It is sometimes very hard to tell which is the disease process and which is his inherent personality. 6 more days and I get a good break!!! My first real vacation in years.
Oct 8, 2011
Stress buster
"In times of trouble, there is no substitute for the sound of your mom's voice." University of Wisconsin study.
Lovely to hear, but - what if we no longer have a living mother? Or, what if the person for whom you provide care is your mother, and she is no longer the mother who comforts you? Then, we need to find other ways to comfort ourselves. Rest, recreation, healthy social connections, exercise, respite. Perhaps we can be the mother our children call for the boost in their feel-good hormone oxytocin; but for our own boost we will need to be more creative. What comforts you?
Lovely to hear, but - what if we no longer have a living mother? Or, what if the person for whom you provide care is your mother, and she is no longer the mother who comforts you? Then, we need to find other ways to comfort ourselves. Rest, recreation, healthy social connections, exercise, respite. Perhaps we can be the mother our children call for the boost in their feel-good hormone oxytocin; but for our own boost we will need to be more creative. What comforts you?
Oct 7, 2011
Solitude
"Periods of solitude refresh our appetite for togetherness." Adam Waytz, PhD
Solitude. Hard to get when one is providing 24/7 caregiving. This week, even with a home health aide here, Dwane drove a vehicle dangerously and fell while trying to use a ladder. Hard to imagine what would happen to him if he lived on his own. The irony: because he is so resistant to any outside support; except for me, of course -- he seems to think he is entitled to my being here for him. Ahh. Guess you can tell from this blog that this has been a rough week. The "36 Hour Day" says most caregivers wait too long to put someone into assisted living. I think they are right.
Solitude. Hard to get when one is providing 24/7 caregiving. This week, even with a home health aide here, Dwane drove a vehicle dangerously and fell while trying to use a ladder. Hard to imagine what would happen to him if he lived on his own. The irony: because he is so resistant to any outside support; except for me, of course -- he seems to think he is entitled to my being here for him. Ahh. Guess you can tell from this blog that this has been a rough week. The "36 Hour Day" says most caregivers wait too long to put someone into assisted living. I think they are right.
Oct 6, 2011
Intuition
"Your body's intuition -- sweating hands or a sinking feeling in your stomach - will point you in the right direction faster than your brain." University of Iowa research.
I think it is important to honor our intuition. While intelligent thinking and reasoning are vital to our lives as healthy human beings, I think we undervalue and under-use our intuition. A friend was bored with a meeting and left, just missing someone he would rather not spend time with. Many years ago I was up on the roof cleaning a skylight and the ladder slipped below reach; Dwane - who had been mowing the lawn - had the hunch to come check on me. Intuition in both cases. Perhaps in this role as caregivers we can rely on intuition. I sometimes have a sense that I should check on Dwane, and it turns out to be at just the right time. Our intellect is something to value and protect. So is our intuition.
I think it is important to honor our intuition. While intelligent thinking and reasoning are vital to our lives as healthy human beings, I think we undervalue and under-use our intuition. A friend was bored with a meeting and left, just missing someone he would rather not spend time with. Many years ago I was up on the roof cleaning a skylight and the ladder slipped below reach; Dwane - who had been mowing the lawn - had the hunch to come check on me. Intuition in both cases. Perhaps in this role as caregivers we can rely on intuition. I sometimes have a sense that I should check on Dwane, and it turns out to be at just the right time. Our intellect is something to value and protect. So is our intuition.
Oct 5, 2011
Fall colors
promoslogos.com"In every walk with nature, one receives far more than he seeks." John Muir
I downloaded this photo (or uploaded it?) from internet because it reminds me of the trail I run or bike every day, and I wanted to share that with you readers. Fall is such a wonderful season here, exquisite colors and temperatures and luscious produce. My favorite season here.
We had a close to serious mishap yesterday. Even with a home health aide and myself here, Dwane got the snowplow keys and was driving it, careening around other vehicles. I managed to stop him before he crashed into the health aide's vehicle, but it was an unpleasant scene. I now know what a friend of mine would complain to me about with her husband's dementia; she would talk of how good her husband would be when with others -- so that they would think he was normally functioning. But, then she would get the backlash. It seems that is true with some types of dementia; the person is able to "rise to the occasion" of functioning well briefly when stimulated by others' presence, but then falls back to status quo - or even below that. We are seeing that even as Dwane was more his old self after our serious conversation, and the last two days have been frightful. Belligerent, argumentative, extremely poor judgment, lots of mishaps. It is an interesting process, isn't it? If we can remain objective enough to observe.
Oct 4, 2011
Attitude
"The greatest discovery of any generation, is that a human being can alter his life by altering his attitude." William James.
I am reading a book lent me by my daughter, Lessons From Everest by Dr. Tim Warren. Very interesting learning the technical aspects of climbing Mt. Everest, but even more interesting in its applicability. Both Mt. Everest and being a caregiver for dementia can be in inhospitable environments (created in the latter by the fallout of behaviors and mishaps), in both one has to find and use resources to survive, in both attitude is an important factor in how well you will do, and in both having the support of others is critical. Dr. Warren failed in his first attempt to summit Mt. Everest, and he succeeded in his second both from his extra physical training in preparation and in his change of attitude. He saw himself succeeding. Let us today see ourselves succeeding (that is not just surviving but thriving) in this role of caregivers. Dr. Warren had the mantra "summit and safe return". Let us have a mantra as well; such as, "caregive with graciousness and thrive".
I am reading a book lent me by my daughter, Lessons From Everest by Dr. Tim Warren. Very interesting learning the technical aspects of climbing Mt. Everest, but even more interesting in its applicability. Both Mt. Everest and being a caregiver for dementia can be in inhospitable environments (created in the latter by the fallout of behaviors and mishaps), in both one has to find and use resources to survive, in both attitude is an important factor in how well you will do, and in both having the support of others is critical. Dr. Warren failed in his first attempt to summit Mt. Everest, and he succeeded in his second both from his extra physical training in preparation and in his change of attitude. He saw himself succeeding. Let us today see ourselves succeeding (that is not just surviving but thriving) in this role of caregivers. Dr. Warren had the mantra "summit and safe return". Let us have a mantra as well; such as, "caregive with graciousness and thrive".
Oct 3, 2011
Outcome of conversation
"By taking decisive actions that address your situation, rather than detaching and wishing problems away, you can gain a sense of personal control." Mayo Clinic Health Letter
Since I told you about my ultimatum with Dwane about appropriate care while I was gone and the 2 choices I gave him, I want to share the results. When I asked him on the day I wanted his decision by, he responded, "have someone come here to stay." Whew!!! My strategy worked. I got what I wanted without a lot of fight and drama from him; by giving him a choice among two options that would give him the safety I wanted for him. This is a strategy often used with children: giving them two choices, such as, 'do you want to brush your teeth before or after you put on your pajamas?' Giving people choices - while controlling the choices within what is desired, often takes the "fight" out of the situation. The person does not feel ordered to do something and is likely to feel more part of the decision. This may not work for all people with dementia, but it worked very well for me. I got something very important to me: to go visit my grandson with no worries about Dwane's safety; and he got to choose the manner in which that safety was arranged. I realize that I did what in substance abuse is called an intervention. That is when you tell someone how their behavior is affecting you, what you want from them, and an ultimatum if they do not agree. I would reserve this technique for the very, very most important things --- and traveling to see my grandson while knowing Dwane was safe - is that important to me.
Since I told you about my ultimatum with Dwane about appropriate care while I was gone and the 2 choices I gave him, I want to share the results. When I asked him on the day I wanted his decision by, he responded, "have someone come here to stay." Whew!!! My strategy worked. I got what I wanted without a lot of fight and drama from him; by giving him a choice among two options that would give him the safety I wanted for him. This is a strategy often used with children: giving them two choices, such as, 'do you want to brush your teeth before or after you put on your pajamas?' Giving people choices - while controlling the choices within what is desired, often takes the "fight" out of the situation. The person does not feel ordered to do something and is likely to feel more part of the decision. This may not work for all people with dementia, but it worked very well for me. I got something very important to me: to go visit my grandson with no worries about Dwane's safety; and he got to choose the manner in which that safety was arranged. I realize that I did what in substance abuse is called an intervention. That is when you tell someone how their behavior is affecting you, what you want from them, and an ultimatum if they do not agree. I would reserve this technique for the very, very most important things --- and traveling to see my grandson while knowing Dwane was safe - is that important to me.
Oct 2, 2011
"You may never be totally ready for a difficult situation, but when something bad happens, keep yourself afloat by:" Mayo Clinic Health Letter
The article on resiliency continues with some pointers on what to do when difficult situations (such as, I might add, being a caregiver for dementia) do occur. The suggestions are:
The article on resiliency continues with some pointers on what to do when difficult situations (such as, I might add, being a caregiver for dementia) do occur. The suggestions are:
- Take care of yourself
- Turn to others for support
- Be proactive
- Accept change and remain hopeful
Oct 1, 2011
Magnify the good
"Educate, enlighten, lift up, positivize, encourage, magnify the good and minimize the bad. This is the only remedy that will heal the corpus populi." Charles Burton.
Charles Burton was a publisher, and this expressed his belief of his responsibility of what he published in his magazine. It reflects my beliefs too. In this blog I want to educate, enlighten, lift up, positivize, and magnify the good and minimize the bad. Goodness knows we who are caregivers for dementia could magnify the bad; as there is plenty of it. But, honestly, what good would that do? I am re-reading "The 36 Hour Day" by Mace and Rabins, as I think it remains the single best resource for dealing with dementia; and I need to update my strategies for dealing with the "bad" -- which includes his inability to be aware of his own cognitive limitations and functioning, his defensiveness, the difficulty communicating. I update my strategies to deal with the "bad", so that I can focus on the "good": his cute sense of humor, his efforts to stay functioning, his desire to be a good person. Together we can do this caregiving, do it well, and become better persons for having done it.
Charles Burton was a publisher, and this expressed his belief of his responsibility of what he published in his magazine. It reflects my beliefs too. In this blog I want to educate, enlighten, lift up, positivize, and magnify the good and minimize the bad. Goodness knows we who are caregivers for dementia could magnify the bad; as there is plenty of it. But, honestly, what good would that do? I am re-reading "The 36 Hour Day" by Mace and Rabins, as I think it remains the single best resource for dealing with dementia; and I need to update my strategies for dealing with the "bad" -- which includes his inability to be aware of his own cognitive limitations and functioning, his defensiveness, the difficulty communicating. I update my strategies to deal with the "bad", so that I can focus on the "good": his cute sense of humor, his efforts to stay functioning, his desire to be a good person. Together we can do this caregiving, do it well, and become better persons for having done it.
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