"To be perfectly satisfied to let your light shine wherever you may go without ever looking back to see if there were results or not, is the mark of a great soul," Christian D. Larson.
We make a difference in life, whether we are aware of it or not; and that can be a positive difference or a negative one. Long ago when preparing to relocate, a colleague said she would miss my energy. That was a new way of thinking, and it was good feedback to see how another person sees me in the world. Yesterday at a large warehouse store a tiny child came up and grabbed my pant leg while I was standing and scanning the produce section. I bent and chatted with her, 2 years old she said, --- I was concerned that she seemed to be unsupervised and wanted to engage her until her family arrived. After a brief time, her grandmother arrived. Any one of us can make a difference in someone's else's life. I was a safe person with whom the 2-year old could interact until her family found her. Perhaps she intuited that.
As dementia caregivers we also make a difference in the world: to the person for whom we provide care, to the world who sees how we interact with the person for whom we provide care, to the clerks and other service providers in how we treat them as we do transactions.
Consider that it is true that you make a difference in the world. Consider that it is important for you to make a conscious intention whether that difference be a positive or a negative difference. In this case, I think it is impossible to have a negligible effect: we either have a positive or a negative effect on our world. It can be a conscious choice to leave any environment better for having been there.
Feb 28, 2011
Feb 27, 2011
Creativity
"Everyone is at his or her best when cultivating various forms of creative expression and finding ways to give them an outlet," Gregory Toole.
Creativity is an important aspect of being fully human. There are many ways to be creative. For me, those ways include writing, cooking, communicating, relating, painting, and conducting psychological evaluations. This might seem like an odd combination of activities, but they all have similar qualities. They all involve active engagement, full participation, seeing all the options, and seeing the mystery. Being creative is essential to life. Some people do needlework, or woodworking, hunting, performing. Being creative is important in dementia caregiving too. While addressing this task of caregiving, my intention is to be as creative as possible, to consider all the options for both of us, to make our living space welcoming and lovely, to surround us with beauty and harmony, to have fun, to move our bodies in health, and to stimulate our minds. The aspects of these activities changes, as do the stages of dementia, but the essential thing is to have the goal: To be creative within our role as dementia caregiver.
Creativity is an important aspect of being fully human. There are many ways to be creative. For me, those ways include writing, cooking, communicating, relating, painting, and conducting psychological evaluations. This might seem like an odd combination of activities, but they all have similar qualities. They all involve active engagement, full participation, seeing all the options, and seeing the mystery. Being creative is essential to life. Some people do needlework, or woodworking, hunting, performing. Being creative is important in dementia caregiving too. While addressing this task of caregiving, my intention is to be as creative as possible, to consider all the options for both of us, to make our living space welcoming and lovely, to surround us with beauty and harmony, to have fun, to move our bodies in health, and to stimulate our minds. The aspects of these activities changes, as do the stages of dementia, but the essential thing is to have the goal: To be creative within our role as dementia caregiver.
Feb 26, 2011
Birthday
“The old believe everything; the middle aged suspect everything: the young know everything.”
Oscar Wilde.
Dwane is soon to have his 75th birthday. He seems so young to have this terminal and progressive disease of Lewy Body Dementia, but age is no respecter of dementia - although age is a risk factor. It has occurred to me we need to do something special to celebrate this birthday. He so loves family, but his own family lives distantly; so my family will stand in stead. A family party, with cake and ice cream (his favorite: vanilla).
A birthday gift: He continues to have a period of lucidity, over a week now. Lovely for both of us. And, a good thing for both of us, as I am just coming out of the most ill I have ever been, giving me a new respect for the influenza virus.
Oscar Wilde.
Dwane is soon to have his 75th birthday. He seems so young to have this terminal and progressive disease of Lewy Body Dementia, but age is no respecter of dementia - although age is a risk factor. It has occurred to me we need to do something special to celebrate this birthday. He so loves family, but his own family lives distantly; so my family will stand in stead. A family party, with cake and ice cream (his favorite: vanilla).
A birthday gift: He continues to have a period of lucidity, over a week now. Lovely for both of us. And, a good thing for both of us, as I am just coming out of the most ill I have ever been, giving me a new respect for the influenza virus.
Feb 25, 2011
5 tips for decision making
"Whether you're caring for someone at home, or have moved them to a care facility, here are 5 simple messages that may serve you from time to time:
Learn to separate what you can and can't control — many things are simply out of your hands.
Do all you can and then let it go.
Make a decision and don't look back — believe you made the best decision you could at the time.
Forgive yourself.
Remember, we feel guilty because we love." Mayo Alzheimer's Caregiving Newsletter.
Good tips to help with this very difficult task.
Learn to separate what you can and can't control — many things are simply out of your hands.
Do all you can and then let it go.
Make a decision and don't look back — believe you made the best decision you could at the time.
Forgive yourself.
Remember, we feel guilty because we love." Mayo Alzheimer's Caregiving Newsletter.
Good tips to help with this very difficult task.
Feb 24, 2011
Contentment
"Happiness is the sum of your life choices. People who are happy seem to intuitively know this, and their lives are built on the following pillars: Devoting time to family and friends, Appreciating what they have, Maintaining an optimistic outlook, Feeling a sense of purpose,
Living in the moment," Mayo Clinic Stress Management newsletter.
I have been ill with an upper respiratory viral infection, influenza, the doctor said. I thought I had taken the precautions of staying well: did get the flu vaccine last fall, do eat well, exercise regularly, maintain mental health. But, this illness coincides with feeling very discouraged, and I don't think that is a coincidence. So, with the sometimes-overwhelming task of being a dementia caregiver, how do we take care of our own health? It is imperative, as statistics have frightening figures of how many caregivers die before the care receiver. The pillars above are good reminders of what could be a worthy compass for living our lives the way we want, and the way that brings us contentment. As dementia caregivers, most of us are devoting considerable time to family or friends -- at least the care receiver. But we need to be mindful to keep the other important relationships as priorities too. Appreciating what we have: the attitude of gratitude worthwhile practice. Maintaining optimism: in the face of a progressive and terminal illness, this can prove difficult, but it is important. Living in the moment: a good one for me. The tasks will get done; I don't need to keep reviewing them in my head. Feeling a sense of purpose: sometimes this task of dementia caregiver can seem small in importance in the scheme of big things going on in the world, or perhaps big things we have accomplished in our own lives. But, perhaps there is not much which is more important than to be witness to the ending stages of another's life.
Living in the moment," Mayo Clinic Stress Management newsletter.
I have been ill with an upper respiratory viral infection, influenza, the doctor said. I thought I had taken the precautions of staying well: did get the flu vaccine last fall, do eat well, exercise regularly, maintain mental health. But, this illness coincides with feeling very discouraged, and I don't think that is a coincidence. So, with the sometimes-overwhelming task of being a dementia caregiver, how do we take care of our own health? It is imperative, as statistics have frightening figures of how many caregivers die before the care receiver. The pillars above are good reminders of what could be a worthy compass for living our lives the way we want, and the way that brings us contentment. As dementia caregivers, most of us are devoting considerable time to family or friends -- at least the care receiver. But we need to be mindful to keep the other important relationships as priorities too. Appreciating what we have: the attitude of gratitude worthwhile practice. Maintaining optimism: in the face of a progressive and terminal illness, this can prove difficult, but it is important. Living in the moment: a good one for me. The tasks will get done; I don't need to keep reviewing them in my head. Feeling a sense of purpose: sometimes this task of dementia caregiver can seem small in importance in the scheme of big things going on in the world, or perhaps big things we have accomplished in our own lives. But, perhaps there is not much which is more important than to be witness to the ending stages of another's life.
Feb 23, 2011
Benefit of Two languages
"Mastering a second language can pump up your brain in ways that seem to delay getting Alzheimer's disease later on," Associated Press report of scientist's findings.
It is too late for prevention for whoever we are dementia caregivers for, but we can continue to look at research for ourselves and others. Brains in which people are bilingual seem to be more flexible and have better executive control. Studies of people with Alzheimer's disease showed that people who were bilingual had Alzheimer's symptom onset 4-5 years later than people who were monolingual. While being bilingual did not prevent Alzheimer's disease, it appears that "the years of robust executive control provide a buffer so that symptoms don't become apparent as quickly, (Ellen Bialystok, psychology professor at York University in Toronto).
It is too late for prevention for whoever we are dementia caregivers for, but we can continue to look at research for ourselves and others. Brains in which people are bilingual seem to be more flexible and have better executive control. Studies of people with Alzheimer's disease showed that people who were bilingual had Alzheimer's symptom onset 4-5 years later than people who were monolingual. While being bilingual did not prevent Alzheimer's disease, it appears that "the years of robust executive control provide a buffer so that symptoms don't become apparent as quickly, (Ellen Bialystok, psychology professor at York University in Toronto).
Feb 22, 2011
Lucid moments
"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." Mayo Clinic Patient Education.
We have been experiencing a few days of increased lucidity, so yesterday I asked Dwane how he thought he was doing, and he replied that he thought he had "lost a lot of ground in the last couple weeks." When asked what he has noticed, he says he has more trouble with groping for words. As an observer, it is interesting that he is more aware of his decline in these periods of lucidity, but these periods of lucidity are actually a time when his decline is less apparent. Perhaps the periods of lucidity put him in a place of more awareness of his overall condition, as he has been in a decline all winter. It is nice to have him "back" to talk with, to feel like there is a partnership in this disease process. We talked about how frightening this is for both of us.
We have been experiencing a few days of increased lucidity, so yesterday I asked Dwane how he thought he was doing, and he replied that he thought he had "lost a lot of ground in the last couple weeks." When asked what he has noticed, he says he has more trouble with groping for words. As an observer, it is interesting that he is more aware of his decline in these periods of lucidity, but these periods of lucidity are actually a time when his decline is less apparent. Perhaps the periods of lucidity put him in a place of more awareness of his overall condition, as he has been in a decline all winter. It is nice to have him "back" to talk with, to feel like there is a partnership in this disease process. We talked about how frightening this is for both of us.
Feb 21, 2011
Lewy body article
""Right now more than 10.9 million Americans are caring for someone with Alzheimer's or dementia. Worldwide, the number of Alzheimer's cases is expected to double by 2030." Beth Macy.
The O - Oprah Magazine, March 2011, has an article about someone descending into Lewy body dementia. It is the first article I have read specific to Lewy Body Dementia. While it is written by someone who does not spend a lot of time with the woman, it is interesting, nevertheless, in catching the unique characteristics of Lewy body dementia. It is called "Before I Forget", and it could be a good article for family or friends who want to better understand this disease.
The O - Oprah Magazine, March 2011, has an article about someone descending into Lewy body dementia. It is the first article I have read specific to Lewy Body Dementia. While it is written by someone who does not spend a lot of time with the woman, it is interesting, nevertheless, in catching the unique characteristics of Lewy body dementia. It is called "Before I Forget", and it could be a good article for family or friends who want to better understand this disease.
Feb 20, 2011
Taking inventory
"The richness of the human experience would lose something of rewarding joy if there were no limitations to overcome," Helen Keller.
With an overnight respite I have had time to step back and take a look at how we are doing. For me: I have felt overwhelmed by obligations and responsibilities, and extra things to take care of. For Dwane: he has had a steady decline this fall/winter. It is sad to see. In 3+ years we have lived with this diagnosis, it has been interesting to see the process. He was combative at first; occurs to me now that he was fighting the onset of his limitations. Then we had an amazing break last summer with him seeming almost like his old self. Now this fall and winter, much more decline, but he is usually in good spirits.
As caregiver it is so important to have breaks from the responsibilities of caregiving and to gain perspective so that we can see how the journey is going, not just for the person with dementia, but for us as dementia caregivers. It is only by gaining insight that we can alter the course of our actions and set the tone for how we want to live. What rewarding joy can we find in our experience today, as dementia caregivers?
With an overnight respite I have had time to step back and take a look at how we are doing. For me: I have felt overwhelmed by obligations and responsibilities, and extra things to take care of. For Dwane: he has had a steady decline this fall/winter. It is sad to see. In 3+ years we have lived with this diagnosis, it has been interesting to see the process. He was combative at first; occurs to me now that he was fighting the onset of his limitations. Then we had an amazing break last summer with him seeming almost like his old self. Now this fall and winter, much more decline, but he is usually in good spirits.
As caregiver it is so important to have breaks from the responsibilities of caregiving and to gain perspective so that we can see how the journey is going, not just for the person with dementia, but for us as dementia caregivers. It is only by gaining insight that we can alter the course of our actions and set the tone for how we want to live. What rewarding joy can we find in our experience today, as dementia caregivers?
Feb 19, 2011
Character
"The ultimate measure of a man (woman) is not where he/she stands in moments of comfort and convenience, but where he/she stands at times of challenge and controversy," Martin Luther King, Jr.
I just read an article printed in Financial Advisor by Robert Laura, "The Dark Side of Retirement", which I think applies even more, perhaps, to being a dementia caregiver. According to Mr. Laura retirement is too often marred by "a hidden epidemic of depression and addiction". The suggested way to address this is to make sure that one still gets the needs of social interaction and friendships, a sense of accomplishment, mental stimulation, the satisfaction of doing something worthwhile, recognition and respect -- that one may have gotten from one's professional work. Being a dementia caregiver may be even more isolating than retirement, and it seems that it would be wise for us to make sure we are getting the above needs met, so that we avoid both depression and addiction. In my own case, I maintain a general sense of optimism, but I also go through periods of discouragement and even despair. This is such a long haul; it is hard to see any light at the end of the tunnel at times. It is important to honor those feelings; we are only humans -- doing a superhuman task. But, we need to be vigilant about not allowing ourselves to be mired down for too long. Today a friend suggested that we trade off having our husbands get together (both have dementia). What a great idea! What creative ways can you think of to give yourself hope and encouragement?
I just read an article printed in Financial Advisor by Robert Laura, "The Dark Side of Retirement", which I think applies even more, perhaps, to being a dementia caregiver. According to Mr. Laura retirement is too often marred by "a hidden epidemic of depression and addiction". The suggested way to address this is to make sure that one still gets the needs of social interaction and friendships, a sense of accomplishment, mental stimulation, the satisfaction of doing something worthwhile, recognition and respect -- that one may have gotten from one's professional work. Being a dementia caregiver may be even more isolating than retirement, and it seems that it would be wise for us to make sure we are getting the above needs met, so that we avoid both depression and addiction. In my own case, I maintain a general sense of optimism, but I also go through periods of discouragement and even despair. This is such a long haul; it is hard to see any light at the end of the tunnel at times. It is important to honor those feelings; we are only humans -- doing a superhuman task. But, we need to be vigilant about not allowing ourselves to be mired down for too long. Today a friend suggested that we trade off having our husbands get together (both have dementia). What a great idea! What creative ways can you think of to give yourself hope and encouragement?
Feb 18, 2011
Levity
"The greatest revolution in our generation is the discovery that human beings, by changing the inner attitudes of their minds, can change the outer aspects of their lives," William James.
Yesterday, the day of respite from obligations was good for me. I see that I have again become too encumbered with obligations. Tonight I have respite and fun planned, and I asked the respite care provider to do a task for me that I would have to do otherwise. Burn some of Dwane's vhs tapes to dvd. Small thing, but now I won't have to learn how to run the machine and do the task.
I have also decided to implement once again the fun day once a week. Yesterday we went to an upscale and fun new place for soup for lunch before picking up Dwane's new eyeglasses. Next week I will plan a trip to the mineral hot springs pool. I will plan for more fun in my/our lives. I need fun and some carefree time to balance the many obligations of being a dementia caregiver, and the fun is good for him too.
Yesterday, the day of respite from obligations was good for me. I see that I have again become too encumbered with obligations. Tonight I have respite and fun planned, and I asked the respite care provider to do a task for me that I would have to do otherwise. Burn some of Dwane's vhs tapes to dvd. Small thing, but now I won't have to learn how to run the machine and do the task.
I have also decided to implement once again the fun day once a week. Yesterday we went to an upscale and fun new place for soup for lunch before picking up Dwane's new eyeglasses. Next week I will plan a trip to the mineral hot springs pool. I will plan for more fun in my/our lives. I need fun and some carefree time to balance the many obligations of being a dementia caregiver, and the fun is good for him too.
Feb 17, 2011
Restoring oneself
"Values are the measure of what's important to us. Our lives can be brought into better balance and harmony when we reassess our values and align our lives with them," Gregory Toole.
I have been stretched too thin with responsibilities lately, and feeling frazzled. Today I have cleared my day of any obligation, and I will rest and restore my spirit. It is time once again to think about what I can pay others to do. I must come up with less obligations that I feel I need to fulfill. So, a day of prioritizing. Of course, there will be the meals, etc.; but nothing else. I need to rest. It is so important to honor our own needs.
I have been stretched too thin with responsibilities lately, and feeling frazzled. Today I have cleared my day of any obligation, and I will rest and restore my spirit. It is time once again to think about what I can pay others to do. I must come up with less obligations that I feel I need to fulfill. So, a day of prioritizing. Of course, there will be the meals, etc.; but nothing else. I need to rest. It is so important to honor our own needs.
Feb 16, 2011
Support groups
"Socrates, upon being told that he was the wisest man, said it probably was true, for he knew enough to know that he knew nothing." Emma Curtis Hopkins.
I went to my first support group meeting yesterday. Either the support group is oriented differently, or my expectations were flawed. I wanted and needed information on how to support me, how to survive this task of dementia caregiver. The support group lesson was on how the caregiver can extend her/his energy even further, by focusing on things one could do for the person with dementia. I'm sure there is a time and place for that information, but what I wanted to know was what supports are out there to support us both? I intend to do further research.
I went to my first support group meeting yesterday. Either the support group is oriented differently, or my expectations were flawed. I wanted and needed information on how to support me, how to survive this task of dementia caregiver. The support group lesson was on how the caregiver can extend her/his energy even further, by focusing on things one could do for the person with dementia. I'm sure there is a time and place for that information, but what I wanted to know was what supports are out there to support us both? I intend to do further research.
Feb 15, 2011
Peace of mind
"No one destroys our joy but ourselves," Ernest Holmes.
I know the above statement is true. It is part of our maturation as humans to stop saying, "You made me mad." and evolve into, "I allowed your action to make me angry." The control over our happiness lies exclusively within ourselves. But, what of those times we feel too much under assault? In recent days we have had a renter give abrupt notice of moving, the weight of the snow has crushed my greenhouse, and tax preparation is looming. What about when we feel overwhelmed? One of the most difficult things about being a dementia caregiver is trying to find something to look forward to. It seems that psychologically I need things to look forward to. Sometimes that is hard, and, like happiness, it is up to me to create those things to look forward to. That is my goal for today: finding something to look forward to. What are the things you look forward to?
I know the above statement is true. It is part of our maturation as humans to stop saying, "You made me mad." and evolve into, "I allowed your action to make me angry." The control over our happiness lies exclusively within ourselves. But, what of those times we feel too much under assault? In recent days we have had a renter give abrupt notice of moving, the weight of the snow has crushed my greenhouse, and tax preparation is looming. What about when we feel overwhelmed? One of the most difficult things about being a dementia caregiver is trying to find something to look forward to. It seems that psychologically I need things to look forward to. Sometimes that is hard, and, like happiness, it is up to me to create those things to look forward to. That is my goal for today: finding something to look forward to. What are the things you look forward to?
Feb 14, 2011
Valentine's Day
"Blessed are those who can love much and love again regardless of the results." Gregory Toole.
One of the greatest losses for a person who loves someone with dementia is the loss of the relationship, no matter whether that is friend, lover, parent. The disease of dementia claims the essence of who the person was, and the ability of that person to relate fully to his/her exterior world. So, those of us who are dementia caregivers give love without, perhaps, its being obviously returned. If we no longer get attention, conversation, thoughtfulness, from the person with dementia, where can we get it? I find it helpful to think of the people who love me and are able to show that they do. My children, dear friends, service providers. Where can we, as dementia caregivers, get the positive regard that will nurture our spirits? Let's see if we can add one more source of love to our world today.
One of the greatest losses for a person who loves someone with dementia is the loss of the relationship, no matter whether that is friend, lover, parent. The disease of dementia claims the essence of who the person was, and the ability of that person to relate fully to his/her exterior world. So, those of us who are dementia caregivers give love without, perhaps, its being obviously returned. If we no longer get attention, conversation, thoughtfulness, from the person with dementia, where can we get it? I find it helpful to think of the people who love me and are able to show that they do. My children, dear friends, service providers. Where can we, as dementia caregivers, get the positive regard that will nurture our spirits? Let's see if we can add one more source of love to our world today.
Feb 13, 2011
Belief
"You can do only what you can believe you can do," Steve Biegler.
Coaches know this. Athletes training for the Olympics and other events know this, and use visualization and other techniques to help them believe they can achieve their goal. We need to know we can do this as dementia caregivers too. I mean really believe we can do this, even survive this. With statistics so bleak about the survival rate of caregivers, we must know we can survive this service we are providing. Then, even better than survive it, we need to know that we can come out the other side of this as better people, not bitter and bedraggled. So, together, let us believe we can survive this, and let us believe we can thrive within this role as dementia caregivers. One way to help our belief is to look for others who have done this and survived and thrived. I can think of a handful of people who can be models for me. Can you think of some?
Another way to support our being dementia caregivers is an example we heard in an inspirational talk yesterday: Cut from your lives those people who do not support your highest behavior. Or, conversely, keep among our friends and conversations only those people who support us to be the best we can be. I think if we look around at the people in our lives, we will see both those who support us to be our best selves, and those who do not support that. Let us consider during this time of considerable stress as dementia caregivers, spending time only with those people who support us to be the best we can be. And let us avoid those who drag us down.
Coaches know this. Athletes training for the Olympics and other events know this, and use visualization and other techniques to help them believe they can achieve their goal. We need to know we can do this as dementia caregivers too. I mean really believe we can do this, even survive this. With statistics so bleak about the survival rate of caregivers, we must know we can survive this service we are providing. Then, even better than survive it, we need to know that we can come out the other side of this as better people, not bitter and bedraggled. So, together, let us believe we can survive this, and let us believe we can thrive within this role as dementia caregivers. One way to help our belief is to look for others who have done this and survived and thrived. I can think of a handful of people who can be models for me. Can you think of some?
Another way to support our being dementia caregivers is an example we heard in an inspirational talk yesterday: Cut from your lives those people who do not support your highest behavior. Or, conversely, keep among our friends and conversations only those people who support us to be the best we can be. I think if we look around at the people in our lives, we will see both those who support us to be our best selves, and those who do not support that. Let us consider during this time of considerable stress as dementia caregivers, spending time only with those people who support us to be the best we can be. And let us avoid those who drag us down.
Feb 12, 2011
Efficiency
Sometimes in an effort to accomodate my own schedule I write these blogs the evening before, and I have discovered they do not always reflect the date on which I post them. The last two days fall under Feb 9; whereas, they were for Feb 11 and 12. Curious. I will check into changing this.
Feb 9, 2011
Money saving tips
"We can tell our values by looking at our checkbook stubs." ~Gloria Steinem
The way we steward our money is a good way to know what we value. I like to get good value for my money, and so would like to share a few tips that you may or may not already know about. There is so much cost associated with a person having dementia, that it is good to save money where we can.
1. Eye exams: We discovered that by going to an ophthalmologist versus an optometrist (the former is a medical doctor with a speciality in eye care, while the latter is someone trained to do eye exams) Medicare and supplemental insurance cover the cost of the exams.
2. Hearing aids: We have friends who have gone to some of the business franchise places that are familiar to all of us because of their advertising, but we discovered that by going to an audiologist associated with a medical facility, Medicare and supplemental insurance pay for the exams. And, while hearing aids are currently not covered by Medicare or our supplemental insurance (at least they were not when Dwane got his), our experience is that the hearing aids were much less expensive from this medical-facility source. About $3000 versus about $9000. The audiologist did need a referral from a medical doctor for insurance to cover the cost of the exam.
3. Long term care insurance: If you purchased it and intend to implement it, our insurance advisor suggested that we implement home health care first because many insurance policies have a 90-day exclusion clause, which means you pay out of pocket for those first 90 days. Home health care is less expensive than either assisted living or nursing home placement. So, if you intend to use your long term care insurance, it will benefit you to plan ahead so that -- if you have an exclusion clause of a certain number of days -- you are paying for the least expensive care during that exclusionary period of time.
4. Taxes: When you file your federal income taxes this year (U.S.), be sure to consider doing a longer form so that you can deduct medical expenses. Check with your CPA (certified public accountant), tax attorney or accountant for current IRS rules, but most of us with this terminal illness have significant medical expenses which can be partially deducted. If you traveled for medical services, as we did when we went to Mayo, check to see about including lodging and food as part of your medical expenses. And don't forget to include all that you have paid for medications, especially remember to consider what you paid while in the prescription drug coverage "donut hole". And, if you did buy eyeglasses, hearing aids, walkers, etc., list those for your accountant. (disclaimer: I am not a CPA. I recommend that you check with whoever does your taxes for current tax regulations. These suggestions are just meant to be reminders of what may affect the taxes you pay.)
What other ways can we save money?
The way we steward our money is a good way to know what we value. I like to get good value for my money, and so would like to share a few tips that you may or may not already know about. There is so much cost associated with a person having dementia, that it is good to save money where we can.
1. Eye exams: We discovered that by going to an ophthalmologist versus an optometrist (the former is a medical doctor with a speciality in eye care, while the latter is someone trained to do eye exams) Medicare and supplemental insurance cover the cost of the exams.
2. Hearing aids: We have friends who have gone to some of the business franchise places that are familiar to all of us because of their advertising, but we discovered that by going to an audiologist associated with a medical facility, Medicare and supplemental insurance pay for the exams. And, while hearing aids are currently not covered by Medicare or our supplemental insurance (at least they were not when Dwane got his), our experience is that the hearing aids were much less expensive from this medical-facility source. About $3000 versus about $9000. The audiologist did need a referral from a medical doctor for insurance to cover the cost of the exam.
3. Long term care insurance: If you purchased it and intend to implement it, our insurance advisor suggested that we implement home health care first because many insurance policies have a 90-day exclusion clause, which means you pay out of pocket for those first 90 days. Home health care is less expensive than either assisted living or nursing home placement. So, if you intend to use your long term care insurance, it will benefit you to plan ahead so that -- if you have an exclusion clause of a certain number of days -- you are paying for the least expensive care during that exclusionary period of time.
4. Taxes: When you file your federal income taxes this year (U.S.), be sure to consider doing a longer form so that you can deduct medical expenses. Check with your CPA (certified public accountant), tax attorney or accountant for current IRS rules, but most of us with this terminal illness have significant medical expenses which can be partially deducted. If you traveled for medical services, as we did when we went to Mayo, check to see about including lodging and food as part of your medical expenses. And don't forget to include all that you have paid for medications, especially remember to consider what you paid while in the prescription drug coverage "donut hole". And, if you did buy eyeglasses, hearing aids, walkers, etc., list those for your accountant. (disclaimer: I am not a CPA. I recommend that you check with whoever does your taxes for current tax regulations. These suggestions are just meant to be reminders of what may affect the taxes you pay.)
What other ways can we save money?
Nose spray?
"In the past several years, researchers have been investigating the use of insulin to treat Alzheimer's disease. One of the challenges is how to provide insulin in such a way that it improves brain function without disrupting your blood sugar levels. If your blood sugar drops too low, for example, it can create complications, such as confusion, heart palpitations, anxiety and visual disturbances. Preliminary research suggests that when taken as a nose spray, insulin reaches the brain within a few minutes and improves memory. However, this research involved small groups of participants who had either early Alzheimer's disease or mild cognitive impairment." Glenn Smith, Ph.D., Mayo Clinic.
Preliminary research, perhaps promising, with continued research planned. This is an interesting treatment method, and it would be good to keep an eye on the results. Insulin supports normal memory function, and low levels may be a part of Alzheimer's and other mild cognitive impairments. It is not mentioned whether this may be beneficial for Lewy Body Dementia, but research into the cause and treatment of Alzheimer's may very well benefit other types of dementia.
Preliminary research, perhaps promising, with continued research planned. This is an interesting treatment method, and it would be good to keep an eye on the results. Insulin supports normal memory function, and low levels may be a part of Alzheimer's and other mild cognitive impairments. It is not mentioned whether this may be beneficial for Lewy Body Dementia, but research into the cause and treatment of Alzheimer's may very well benefit other types of dementia.
Family
"The soul's wisdom in incarnating in human form surely includes a matching of family with the soul's path. I would suggest that each of us has the absolutely perfect family to support the soul's journey of unfolding into oneness," Gregory Toole.
Have you ever met someone who blames their circumstances on their family of origin? It is tempting perhaps to consider it is someone else's fault for one's life circumstances. But there is another way to look at it, and that is that our family of origin was the perfect garden for the tending of our life's journey. That has been a consideration of mine for sometime, but a more recent consideration is that perhaps that is true of one's family by marriage too. Any family relationship can be rift with tension, and the stress of a family member having dementia accentuates those possibilities. A good practice might be to think that everyone is doing the best he/she can under any given circumstances. Perhaps we would like more support from extended family, and perhaps we might consider that the stress of the dementia and/or other life circumstances prevents those family members from being more supportive.
That is why it is even more imperative that we have a support system that is professional and not dependent upon friends or family. Having support from many sources is ideal, but may not be a reality. It behooves us as caregivers to notice where our support does lie, and not resist or push against where our support does not lie. It is just good for our mental health. It is also good for our mental health to look for and be grateful for those people who are supportive of us and the person for whom we provide care.
Have you ever met someone who blames their circumstances on their family of origin? It is tempting perhaps to consider it is someone else's fault for one's life circumstances. But there is another way to look at it, and that is that our family of origin was the perfect garden for the tending of our life's journey. That has been a consideration of mine for sometime, but a more recent consideration is that perhaps that is true of one's family by marriage too. Any family relationship can be rift with tension, and the stress of a family member having dementia accentuates those possibilities. A good practice might be to think that everyone is doing the best he/she can under any given circumstances. Perhaps we would like more support from extended family, and perhaps we might consider that the stress of the dementia and/or other life circumstances prevents those family members from being more supportive.
That is why it is even more imperative that we have a support system that is professional and not dependent upon friends or family. Having support from many sources is ideal, but may not be a reality. It behooves us as caregivers to notice where our support does lie, and not resist or push against where our support does not lie. It is just good for our mental health. It is also good for our mental health to look for and be grateful for those people who are supportive of us and the person for whom we provide care.
Feb 8, 2011
Dying: talk about it or not?
“Live as if you were to die tomorrow. Learn as if you were to live forever.” Mahatma Gandi
In a conversation with a dear friend recently, she seemed surprised that Dwane is well aware he is dying It is a personal decision whether to be up front with the person with dementia that he/she is dying, and it is a moot point if the person is not lucid enough to have the conversation. It is a personal philosophy of mine to deal with things open and directly. Years ago I had a friend who was afraid she had something wrong with her, but when it was suggested she go to the doctor, she refused. She said she was afraid to find out something was wrong. Not me. Whatever the news is; I want to know what it is and I want to deal with it. My belief is that we can deal better with life's challenges if we are well prepared with information. I also wanted Dwane and me to make the very best of the time we have left. That is why we went overseas to see his daughter; that is why I took him to Sagamore, to the seashore, back to Mayo Clinic. My approach has been: we are all dying, but now we know within a tighter time frame when he is dying. So, we can choose to do the things we want to do before he dies.
While it is an individual choice whether to discuss with the person who has it that this is a terminal illness (and neither way is right or wrong), there is still merit in our knowing, as caregivers, that we have a finite amount of time with this person. Some types of dementia take years in the dying process, but Lewy Body Dementia usually has a shorter course. Whatever the type of dementia we are dealing with, there is merit in focusing on the quality of the life we have to live.
In a conversation with a dear friend recently, she seemed surprised that Dwane is well aware he is dying It is a personal decision whether to be up front with the person with dementia that he/she is dying, and it is a moot point if the person is not lucid enough to have the conversation. It is a personal philosophy of mine to deal with things open and directly. Years ago I had a friend who was afraid she had something wrong with her, but when it was suggested she go to the doctor, she refused. She said she was afraid to find out something was wrong. Not me. Whatever the news is; I want to know what it is and I want to deal with it. My belief is that we can deal better with life's challenges if we are well prepared with information. I also wanted Dwane and me to make the very best of the time we have left. That is why we went overseas to see his daughter; that is why I took him to Sagamore, to the seashore, back to Mayo Clinic. My approach has been: we are all dying, but now we know within a tighter time frame when he is dying. So, we can choose to do the things we want to do before he dies.
While it is an individual choice whether to discuss with the person who has it that this is a terminal illness (and neither way is right or wrong), there is still merit in our knowing, as caregivers, that we have a finite amount of time with this person. Some types of dementia take years in the dying process, but Lewy Body Dementia usually has a shorter course. Whatever the type of dementia we are dealing with, there is merit in focusing on the quality of the life we have to live.
Hope
"February 2 is cross-quarter day, halfway between the winter solstice and the spring equinox. The sun is becoming an ever greater presence; the days are growing longer," Dr. Joan Borysenko.
We are still in the grips of winter here, but the days are getting longer. Today the sun rise was bathed in beautiful pinks against the scattered clouds. When one looks at the wintry scene outside, it is hard to imagine that spring is coming. Perhaps that is true with this disease of dementia too, sometimes the horizon before us looks so bleak that it is hard to notice the moments of beauty. This is such a harsh and cruel disease, that it is very hard to find hope within it. Last night at dinner, Dwane said, "This salad has everything you could imagine in it." Such moments of awareness are moments of beauty for which I am grateful.
We are still in the grips of winter here, but the days are getting longer. Today the sun rise was bathed in beautiful pinks against the scattered clouds. When one looks at the wintry scene outside, it is hard to imagine that spring is coming. Perhaps that is true with this disease of dementia too, sometimes the horizon before us looks so bleak that it is hard to notice the moments of beauty. This is such a harsh and cruel disease, that it is very hard to find hope within it. Last night at dinner, Dwane said, "This salad has everything you could imagine in it." Such moments of awareness are moments of beauty for which I am grateful.
Feb 7, 2011
Manners
"What is the difference between relationships which struggle and those that do not? Effective communication." Dr. Val Farmer.
Dr. Farmer is talking about marriage in the above quote, but communication is key to any relationship, and it gets harder and harder in a situation with dementia. Dr. Farmer suggests that good manners help in communication, and that can be true also in dealing with dementia. I find that I cannot assume he understands me, that writing things down (such as steps on how to do things, the time we are leaving, what the phone number is) all help, but still communication is difficult. Too many words hinder the understanding, as does talking too fast. So, I try to keep what I say specific and clear and concise. And I try not to be impatient.
Dr. Farmer is talking about marriage in the above quote, but communication is key to any relationship, and it gets harder and harder in a situation with dementia. Dr. Farmer suggests that good manners help in communication, and that can be true also in dealing with dementia. I find that I cannot assume he understands me, that writing things down (such as steps on how to do things, the time we are leaving, what the phone number is) all help, but still communication is difficult. Too many words hinder the understanding, as does talking too fast. So, I try to keep what I say specific and clear and concise. And I try not to be impatient.
Feb 6, 2011
Kindness
"Gentleness is sure to be victorious even in battle, and firmly to maintain its ground," Lao-tzu.
One of the reasons I titled this blog, dementia: living with it graciously, is because I believe in the power of kindness and gentleness. As the above quote states, true strength is not in harsh words or actions, but in quiet and firm gentleness. It is sometimes easy to slip into less desirable behaviors when under stress, such as the stress of caregiving, but it does not serve us or the person with dementia. What is kindness? According to wikipedia, "Kindness is the act or the state of being kind —ie. marked by goodness and charitable behaviour, mild disposition, pleasantness, tenderness and concern for others. It is known as a virtue, and recognized as a value in many cultures and religions." Everything is better in our home when I am consistently kind. I have known since being a young mother, that I had the power to set the tone in the home, and I do so consciously by implementing kindness.
One of the reasons I titled this blog, dementia: living with it graciously, is because I believe in the power of kindness and gentleness. As the above quote states, true strength is not in harsh words or actions, but in quiet and firm gentleness. It is sometimes easy to slip into less desirable behaviors when under stress, such as the stress of caregiving, but it does not serve us or the person with dementia. What is kindness? According to wikipedia, "Kindness is the act or the state of being kind —ie. marked by goodness and charitable behaviour, mild disposition, pleasantness, tenderness and concern for others. It is known as a virtue, and recognized as a value in many cultures and religions." Everything is better in our home when I am consistently kind. I have known since being a young mother, that I had the power to set the tone in the home, and I do so consciously by implementing kindness.
Feb 5, 2011
Persons of the week
"Person of the Week: Caregivers Allow for Dignified Living Situations for Aging Parents. Technology, Villages and Caring Individuals Are Allowing Seniors to Continue Residing at Home," ABC News.
20 million caregivers in America alone, according to ABC News (and how do they count?) And, with the focus of the news program being on caring for one's parents, they probably are not counting those of us caring for a spouse or other family member. They also did not include caregiving for someone with dementia. Of interest were three programs they talked about: Senior Care Programs which is having a person come in for a few hours a day, The "Village" where those in the neighborhood age 50 or older pay $110 to $640 a year to join a village. The membership price depends on the person's income and gets a member help with everything from shopping for groceries to participation in an exercise class. Most of the focus was again on taking care of one's parents, but a bit can be gleaned for caring for someone with dementia. They spoke of an eldercare consultant. I am unaware of any such person in the region where I live. It would be helpful to have a list of resources in one's area. That seems to be one of the challenges of being a caregiver for someone with dementia: finding available assistance.
20 million caregivers in America alone, according to ABC News (and how do they count?) And, with the focus of the news program being on caring for one's parents, they probably are not counting those of us caring for a spouse or other family member. They also did not include caregiving for someone with dementia. Of interest were three programs they talked about: Senior Care Programs which is having a person come in for a few hours a day, The "Village" where those in the neighborhood age 50 or older pay $110 to $640 a year to join a village. The membership price depends on the person's income and gets a member help with everything from shopping for groceries to participation in an exercise class. Most of the focus was again on taking care of one's parents, but a bit can be gleaned for caring for someone with dementia. They spoke of an eldercare consultant. I am unaware of any such person in the region where I live. It would be helpful to have a list of resources in one's area. That seems to be one of the challenges of being a caregiver for someone with dementia: finding available assistance.
Feb 3, 2011
Ask for help
"Caregivers need to ask for help, and be specific," ABC Nightly News with Diane Sawyer.
Easier said than done for some of us, but good advice. I would also add: be wise about whom you ask for help; no sense wasting time and energy asking someone unlikely to be able or willing to be of assistance. We can choose to ask family members, neighbors, friends for specific areas of help.
This ABC segment also said that family members of a person with dementia should offer their support to the caregiver, and they should call regularly to talk with the care receiver. The person with dementia still needs to hear from family members and loved ones; and it is not realistic to think they can do the calling. It is one more way to support both the caregiver and the person with dementia.
Easier said than done for some of us, but good advice. I would also add: be wise about whom you ask for help; no sense wasting time and energy asking someone unlikely to be able or willing to be of assistance. We can choose to ask family members, neighbors, friends for specific areas of help.
This ABC segment also said that family members of a person with dementia should offer their support to the caregiver, and they should call regularly to talk with the care receiver. The person with dementia still needs to hear from family members and loved ones; and it is not realistic to think they can do the calling. It is one more way to support both the caregiver and the person with dementia.
Feb 2, 2011
Giving up independence
"Making a left turn can be especially troublesome. With every year after age 65, the odds of getting into a car crash while attempting to go left increases by 8 percent. With limited mobility to look in both directions, it becomes more difficult to gauge speed, distance and timing, especially when there's oncoming traffic." ABC Nightly News with Diane Sawyer about elders driving.
Continuing their feature of the plight of families dealing with the elderly, ABC News addresses driving. The above statistics are sobering, and they apply to normal aging -- not those with dementia. The tip offered during the segment was for family to have the talk well in advance about giving up driving when the family thought it was necessary. I some how had the wisdom to have that discussion with Dwane when we learned of his diagnosis, but that has not made it easier for him to relinquish things he wants to do: particularly driving. I would love to have ideas from readers on what has worked for them when it is necessary to take away some symbol of independence, especially driving, to those for whom we are caregivers. Taking care of all responsibilities is difficult enough, but then we have the resistance of the person we are trying to help, which is even more difficult for some of us.
Continuing their feature of the plight of families dealing with the elderly, ABC News addresses driving. The above statistics are sobering, and they apply to normal aging -- not those with dementia. The tip offered during the segment was for family to have the talk well in advance about giving up driving when the family thought it was necessary. I some how had the wisdom to have that discussion with Dwane when we learned of his diagnosis, but that has not made it easier for him to relinquish things he wants to do: particularly driving. I would love to have ideas from readers on what has worked for them when it is necessary to take away some symbol of independence, especially driving, to those for whom we are caregivers. Taking care of all responsibilities is difficult enough, but then we have the resistance of the person we are trying to help, which is even more difficult for some of us.
Feb 1, 2011
Self care
"Caregivers need to be supported in their decisions and do what is not only best for the person with the disease, but also what is best for them." Mayo Alzheimer's Newsletter.
How very, very true. In spite of the many tasks before us as caregivers to someone with dementia, it is imperative that we put our own needs first. We cannot let this disease take us down too. One way to take care of our needs is to have some activities that our loved one can do without our involvement. A woman I met recently told me her husband no longer could read, did not watch tv, and would not do something like jigsaw puzzles. He expected her to entertain him all the time. How exhausting! While many people with dementia probably cannot follow the plot in a movie, perhaps music is soothing. Or, we could implement something reader Kathy suggested, a digital photo frame filled with photos of familiar people and events. Brilliant idea. What can you implement today to entertain the care receiver while you get a break? We can always hire someone to come in for us to take a break, or arrange with a friend, but I also like to have activities he can do without my help while I am doing other tasks in the home. What are some activities you have found that can be done independently?
How very, very true. In spite of the many tasks before us as caregivers to someone with dementia, it is imperative that we put our own needs first. We cannot let this disease take us down too. One way to take care of our needs is to have some activities that our loved one can do without our involvement. A woman I met recently told me her husband no longer could read, did not watch tv, and would not do something like jigsaw puzzles. He expected her to entertain him all the time. How exhausting! While many people with dementia probably cannot follow the plot in a movie, perhaps music is soothing. Or, we could implement something reader Kathy suggested, a digital photo frame filled with photos of familiar people and events. Brilliant idea. What can you implement today to entertain the care receiver while you get a break? We can always hire someone to come in for us to take a break, or arrange with a friend, but I also like to have activities he can do without my help while I am doing other tasks in the home. What are some activities you have found that can be done independently?
ABC World News with Diane Sawyer
"Resnick, of the Institute on Aging at the University of Pittsburgh, said the most telling statistic about U.S. caregivers was that they bear more than $200 billion a year in caregiving costs. Bernard, deputy director of the National Institute on Aging, said that many caregivers had health problems they ignored. She said research showed that after receiving training on their relative's disease, caregivers' pressures and depression tended to decrease." ABC World News with Diane Sawyer with noted geriatricians Neil Resnick and Marie A. Bernard.
All this week on ABC's evening news there will be features about the crisis of caregiving. While this series appears to deal more with eldercare (those of us who are dementia caregivers may or may not be also dealing with elders) and what people should do with "mom and dad", there is still valuable information for us. Being caregivers takes an average of 10 years off one's own life, 70% of us are women, and less than 3% of America's physicians have much training in geriatrics. I am hoping the series will offer some concrete suggestions on resources and how to lessen the stress upon us who are caregivers for someone with dementia.
All this week on ABC's evening news there will be features about the crisis of caregiving. While this series appears to deal more with eldercare (those of us who are dementia caregivers may or may not be also dealing with elders) and what people should do with "mom and dad", there is still valuable information for us. Being caregivers takes an average of 10 years off one's own life, 70% of us are women, and less than 3% of America's physicians have much training in geriatrics. I am hoping the series will offer some concrete suggestions on resources and how to lessen the stress upon us who are caregivers for someone with dementia.
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