Again, from a presentation by Dr. Jennifer Carson -"Bravo Zulu", I have selected information to share on relationship-centered care. One of the main ideas of this care is that all parties are involved: the elder, family members, and other care partners such as physicians or a physical therapist. The elder involved needs to:
* have a sense of security knowing that the relationship is safe
* experience a sense of continuity with links to the past and the present
* form a sense of meaningful relationships and a sense of belonging
* develop a sense of a personally designed set of goals that add a sense of purpose
* feel a sense of achievement toward reaching desired goals
* possess a sense of significance - that the individual matters and is of value
This sense framework builds strong bonds and brings success for attaining goals that provide safety and unity for the individual as well as others who are a part of the relationship-centered care.
Sunday, December 22, 2019
Sunday, December 8, 2019
Personal Relationships
As humans we live through and with our relationships with others. Whether we like it or not, there are connections and interdependence with others throughout our lives. We rely on others, just as they rely on us - we are partners.
Who are some of the individuals who are the lost important and valuable in your relationships? Some of these people are supportive and friendly; others are on-again/off-again. And a third group brings peace and tranquility with an occasional upheaval. I guess that latter pretty well describes family. Family members are most likely there when you need them and supportive in many ways, but often these same people can be overbearing and bossy. They believe they know best even though the ultimate decision is really outside of their realm and within the grasp of the person of concern. An individual with dementia is frequently left out of the decision-making process, primarily because of a belief that since s/he cannot make every choice with wisdom, this same person is incapable of making any decision. This simply is not true.
Even within forgetfulness, a person with dementia is still a person, a viable human being with feelings and thoughts and concerns. Including each individual in conversations and activities is right. Yes, forethought and planning are essential such as one-on-one chatting in a quiet locale as opposed to a crowd of blathering in a noisy venue or a slow stroll around the park rather than a stomp through the mall. This, I believe, is just common sense.
Who are some of the individuals who are the lost important and valuable in your relationships? Some of these people are supportive and friendly; others are on-again/off-again. And a third group brings peace and tranquility with an occasional upheaval. I guess that latter pretty well describes family. Family members are most likely there when you need them and supportive in many ways, but often these same people can be overbearing and bossy. They believe they know best even though the ultimate decision is really outside of their realm and within the grasp of the person of concern. An individual with dementia is frequently left out of the decision-making process, primarily because of a belief that since s/he cannot make every choice with wisdom, this same person is incapable of making any decision. This simply is not true.
Even within forgetfulness, a person with dementia is still a person, a viable human being with feelings and thoughts and concerns. Including each individual in conversations and activities is right. Yes, forethought and planning are essential such as one-on-one chatting in a quiet locale as opposed to a crowd of blathering in a noisy venue or a slow stroll around the park rather than a stomp through the mall. This, I believe, is just common sense.
Monday, December 2, 2019
Person-Centered Care
Person-centered care is respectful of an individual's values and fundamental beliefs. These are the principles that guide a person's life through attitudes and actions. These help a person determine right from wrong and are influenced by many sources including one's culture, religion, group affiliations, and the family.
Every person is unique and though it may be difficult to uncover the inner thoughts and feelings, these are vital to know, or at least to be aware of, for assisting in making important decisions. And I really should not say "assisting" but rather supporting a loved one's decisions. We each have our own ways of completing tasks, following routines, and celebrating traditions. Each aspect of these is part of our identity and deserves respect, even if understanding some of these is elusive. All of our quirks and individualism help explain why we act or react in certain ways and why we respond to certain people and situations as we do.
As caregivers support a loved one, they sometimes have to learn more about individual preferences and in some cases, they must "unlearn" preconceived notions about what we have decided that another person knows or thinks or understands. By doing this respect for personhood and person-centered care develops.
Every person is unique and though it may be difficult to uncover the inner thoughts and feelings, these are vital to know, or at least to be aware of, for assisting in making important decisions. And I really should not say "assisting" but rather supporting a loved one's decisions. We each have our own ways of completing tasks, following routines, and celebrating traditions. Each aspect of these is part of our identity and deserves respect, even if understanding some of these is elusive. All of our quirks and individualism help explain why we act or react in certain ways and why we respond to certain people and situations as we do.
As caregivers support a loved one, they sometimes have to learn more about individual preferences and in some cases, they must "unlearn" preconceived notions about what we have decided that another person knows or thinks or understands. By doing this respect for personhood and person-centered care develops.
Personhood versus Institutional Care
In the past most care plans for people as they age came from the medical field or institution with little input from the individual concerned. While the individual may have been consulted about surgery, medications, and living situations, the ultimate decisions were left to those "in charge" of care. So maybe Grandma had chemotherapy at 95 when she really would have preferred some peace. Perhaps Great Uncle John had a hip replacement when he was completely content to use his walker and wheelchair as the thought of surgery and recovery filled him with fear.
The choices made by others are most often well-meaning, but do they truly reflect well-being? Some doctors recommend and perform surgery not based so much on what is best for the patient but rather what makes sense to them as a surgeon. After all, surgery is what they do. I am not dissing on doctors, but rather stating a reality that I have recently confronted. Doctors do what they do: prescribe and perform surgery.
And it is not just doctors. Long-term care facilities do what they do: care for clients in an institutionalized setting. While customized care is always the best in suitability, care facilities often are under-staffed and over-stressed and thus fail to meet all of an individual's needs. Instead of allowing Grandpa to sleep until 10am after a long night of wandering, it is simply easier and often safer to send him the bed at 8pm so he can be dragged from sleep at 6am when showers preface breakfast.
But what if we changed our thinking and adjusted care? What if we made a paradigm shift from "one-size-fits-all" to streamlined, person-centered care? Are we up to the challenge? I believe that we are.
The choices made by others are most often well-meaning, but do they truly reflect well-being? Some doctors recommend and perform surgery not based so much on what is best for the patient but rather what makes sense to them as a surgeon. After all, surgery is what they do. I am not dissing on doctors, but rather stating a reality that I have recently confronted. Doctors do what they do: prescribe and perform surgery.
And it is not just doctors. Long-term care facilities do what they do: care for clients in an institutionalized setting. While customized care is always the best in suitability, care facilities often are under-staffed and over-stressed and thus fail to meet all of an individual's needs. Instead of allowing Grandpa to sleep until 10am after a long night of wandering, it is simply easier and often safer to send him the bed at 8pm so he can be dragged from sleep at 6am when showers preface breakfast.
But what if we changed our thinking and adjusted care? What if we made a paradigm shift from "one-size-fits-all" to streamlined, person-centered care? Are we up to the challenge? I believe that we are.
Saturday, November 23, 2019
Treating People Like VIPs
We all liked to feel valued - important - knowledgeable - a part of something - a voice with family and friends. This value carries over to those with Alzheimer's disease or other dementias. I know it is easy to chat over and around someone who does not appear to understand or to be actively involved in the conversation, but I also recognize that this is absolutely wrong. Inclusion is vital to good physical and mental health.
A recommendation from the Bravo Zulu presentation I attended is treating others like VIPs:
V - valuing their personhood, our relationship and their extended relationships, and their cultural identity;
I - treating people as unique individuals;
P - looking at the world from the perspective of that person;
S - providing a positive and supportive social environment. (Brooker, 2007)
In reality, shouldn't these simple steps be the way that we interact with everyone. From infancy through adulthood, it is nice to have a sense of belonging.
A recommendation from the Bravo Zulu presentation I attended is treating others like VIPs:
V - valuing their personhood, our relationship and their extended relationships, and their cultural identity;
I - treating people as unique individuals;
P - looking at the world from the perspective of that person;
S - providing a positive and supportive social environment. (Brooker, 2007)
In reality, shouldn't these simple steps be the way that we interact with everyone. From infancy through adulthood, it is nice to have a sense of belonging.
Tuesday, November 19, 2019
Relationship-Centered Dementia Care
I am currently a participant in a course offered by Jennifer Carson, PhD, who is with the Sanford Center for Aging at UNR. Called "Bravo Zulu" as it was first intended for members of the military and their families, the topic and information are applicable to everyone serving as care giver or care recipient.
A first step in relationship-centered care is knowing and understanding the loved one with dementia and above all, making him/her an active member of the caregiving planning team. Few people like decisions foisted upon them without a shred of input, and that is true of those with dementia. Understanding of culture and cultural background is key to helping understand how needs can best be met and by offering solutions that match the values and wants of each individual.
Military families as a focus helps attendees better understand culture as the military entails strict rules and protocols especially focused on being tough and never asking for help. Breaking down, or at least chipping some holes in the "no-need-for-assistance" barrier, means that a loved one in need can receive care and advice that benefit good health and healthy living.
It is important in the military culture - just as in every culture - to begin by accepting that military is a general term and that Army, Air Force, Navy, Coast Guard, and Marines are specific. Each branch has a unique creed and mission. Not all military are infantrymen or sailors, just as every person is an individual. Relationship-centered care requires that caregivers fashion care around the concerns and desires of an individualized life history made up of experiences, events, and relationships.
A first step in relationship-centered care is knowing and understanding the loved one with dementia and above all, making him/her an active member of the caregiving planning team. Few people like decisions foisted upon them without a shred of input, and that is true of those with dementia. Understanding of culture and cultural background is key to helping understand how needs can best be met and by offering solutions that match the values and wants of each individual.
Military families as a focus helps attendees better understand culture as the military entails strict rules and protocols especially focused on being tough and never asking for help. Breaking down, or at least chipping some holes in the "no-need-for-assistance" barrier, means that a loved one in need can receive care and advice that benefit good health and healthy living.
It is important in the military culture - just as in every culture - to begin by accepting that military is a general term and that Army, Air Force, Navy, Coast Guard, and Marines are specific. Each branch has a unique creed and mission. Not all military are infantrymen or sailors, just as every person is an individual. Relationship-centered care requires that caregivers fashion care around the concerns and desires of an individualized life history made up of experiences, events, and relationships.
Thursday, November 14, 2019
The Holidays Approach
With some big holidays arriving soon it is important to be prepared to make each event wonderful, safe, and satisfying for everyone, especially a loved one with Alzheimer's disease or other dementia. Even though an individual may appear lost, befuddled, and anxious, s/he still can benefit greatly from the love and camaraderie of family and friends. A few hints include:
1. Plan events for the late morning or early afternoon. This allows plenty of wake-up time plus lots of light to avoid confusion.
2. Determine a quiet spot in your home so that your loved one can be surrounded by those who care, but just a few at a time. Even noisy little ones add joy - but in small doses with rambunctiousness at a minimum.
3. Create a menu of your loved one's favorite dishes, taking under consideration items that come in small bites. A few specialties are perfect - too many may add to angst as decision-making may be tough.
4. Decide where a nap can occur, if necessary. This should be in a quiet area with adequate lighting to avoid potential mix-up in where your loved one is should s/he suddenly awaken. Move a chair, pillows, or soft objects next to the bed or couch in case your loved one should decide to roll. Be sure to check periodically that a peaceful rest is unfolding.
5. Select photo albums or create a slide show to share past events and memories with all of the family, especially designed with your loved one with dementia in mind.
6. Encourage all attendees to be kind and gentle, to assist but not to overwhelm, to help but not demean. Some folks will not be able to deal with this cognitive decline. Help them understand that the same person resides within but it is hard for him/her to engage as in the past.
Love makes a difference!
1. Plan events for the late morning or early afternoon. This allows plenty of wake-up time plus lots of light to avoid confusion.
2. Determine a quiet spot in your home so that your loved one can be surrounded by those who care, but just a few at a time. Even noisy little ones add joy - but in small doses with rambunctiousness at a minimum.
3. Create a menu of your loved one's favorite dishes, taking under consideration items that come in small bites. A few specialties are perfect - too many may add to angst as decision-making may be tough.
4. Decide where a nap can occur, if necessary. This should be in a quiet area with adequate lighting to avoid potential mix-up in where your loved one is should s/he suddenly awaken. Move a chair, pillows, or soft objects next to the bed or couch in case your loved one should decide to roll. Be sure to check periodically that a peaceful rest is unfolding.
5. Select photo albums or create a slide show to share past events and memories with all of the family, especially designed with your loved one with dementia in mind.
6. Encourage all attendees to be kind and gentle, to assist but not to overwhelm, to help but not demean. Some folks will not be able to deal with this cognitive decline. Help them understand that the same person resides within but it is hard for him/her to engage as in the past.
Love makes a difference!
Tuesday, October 1, 2019
Care and Trust...continued
Often, those with dementia become wanderers. A familiar stroll around the neighborhood can turn into a misadventure as steps become jumbled and surroundings become strange. This is even worse, of course, when it comes to driving. Those with dementia still want to be independent and driving is of supreme importance. After all, when a license is removed, the opportunity for freedom and social interaction diminishes creating isolation, dependence, and depression. A good conversation includes these concerns and also potential remedies such as a walking partner or driving services. I also recommend that families contact law enforcement about concerns so that officers can learn walking routines of one who may become lost. A GPS device for shoes and/or an identification bracelet with an emergency number engraved on one side and the health concern on the other are vital.
I recommend that beginning at age 50, people hold a yearly summit about worries, finances, health issues, purchases, and other transactions. By maintaining an open conversation, when problems do arise, much is already out in the open. No, you do not need to divulge deep secrets, precise monetary subjects, or other private material, but honest talk now alleviates some stress of burdensome conversations later. Perhaps spouses, children, and other significant relations may not agree, but at least they are fully aware of wishes and requests. In later family gatherings, if dementia has appeared, realize that your loved one may not be able to assess multi-step processes and questions. A little at a time, a few subjects on the table, will provide the most positive results. “To be continued” is recommended.
This should probably have come at the beginning, however, I wanted to emphasize the worthiness of building trust and personal reliability. Hopefully your loved has recognized some cognitive decline – forgetting dates, losing valuables, feeling perplexed about decisions – and has already suggested a complete medical examination by a neurologist or gerontologist. Self-analysis is undoubtedly the best way to pursue the most beneficial health diagnoses. But sometimes, denial is far easier and so you, as the caring and devoted family member, may be the one to broach this somewhat uncomfortable conversation. Knowing that an abrupt refusal may greet you, plunge on accepting that your concern is of utmost significance.
Care and Trust
With holidays approaching and family and friends visiting, it is essential to maintain calm and safety for loved ones with Alzheimer’s disease. There is nothing like a ruckus to set off a fuse; being prepared can circumvent that. The more I have thought about appropriate behavior and reactions toward those with dementia, the more I understand that this is the way we should treat everyone – with dignity and respect.
Always approach a loved one from the front so that eye contact is made and safety is assured. Speak calmly and evenly with no excess inflection or tones that sound accusatory or gruff. A soft, gentle voice is relaxing and is likely to encourage conversation. Although this conversation may be one way, primarily you speaking, you may find that your loved one engages. While this back and forth conversation may be confusing with responses off topic and strange, the sound resonating from this interaction is precious.
If somewhere during the visit your loved one becomes agitated, frustrated, or angry, again remain calm, nodding in agreement even when you are completely baffled with what is transpiring. Kindness goes a long way in helping comfort someone with dementia. Arguments and raised voices only exacerbate the situation transforming a slightly out-of-kilter moment into a disaster which is difficult or impossible to remedy. You will never “win” an argument with someone with Alzheimer’s disease so relent, throw in the towel, and return to being that serene, supportive friend. You may need to remind other family members to avoid confrontation as well. There may be pressing issue about long-term care and future health choices that need to be discussed, but yelling about these solve nothing.
When the family gathering includes the above-mentioned conversations, be sure to include your loved one. Even in the deepest throes of dementia, the individual still possesses minutes, seconds, even milli-seconds of lucidity. No one likes being talked about or being talked over, so deliver this same dignity to someone with cognitive decline. Those with dementia can be amazing as well as wily, explaining or responding to one idea with clarity and to the next with utter bafflement. Grab the lucid moments and hang on to the treasure that they are.
Wednesday, September 4, 2019
Tips for Getting and Staying Connected
Here are a few tips for getting and staying connected to enrich your body and your soul plus these can provide a tremendous surge in brain stimulation. First, nurture existing relationships as you cultivate new ones. You have to be a friend to have a friend so schedule time and energy to share with others. Remember, too, that there are many lonely people - become a friend to someone who needs one. You might just offer the magic elixir for good health.
Schedule time for friends as you schedule private time for yourself. Life is busy - we can get going about 300 MPH and lose track of something very important - our friends. Call, set a time and place, then follow through. And sometimes, after all of those friendly visits, you just need some down time, time to think, reflect, take a walk, write a letter, or curl up with a cozy blanket and a wonderful book.
As you find more time and energy in your life because of the way you have scheduled time and improved your life with good friends you will find to have time to volunteer. Volunteer to help out to the degree you feel willing and capable. Volunteer where your heart speaks and your soul directs - at a school, for respite, to assist a friend.
This next one comes almost automatically if you have followed the guidance of the aforementioned suggestions. Become involved and socialize. Doing something important adds life value and personal spirituality. You can and do make a difference.
Perhaps one of your new goals (yes, yes, yes) is taking up a bit more physical exercise. Remaining physically active means that the more you do the more capable you become. Perhaps your new friend loves to bike. Maybe your old buddy is into weightlifting. Or maybe you are feeling brave and are ready to launch out into something new and different all on your own. Just do it!
Empower your brain by taking a class, learning to play an instrument, or immersing yourself in a second language. A little challenge to your mind is a wonderful thing. Although at the outset you may sense some frustration, that's OK. It just means that your brain is filling to capacity with a super new subject or activity. This is good for you and promotes brain growth and mental power.
No matter what you choose, your brain and your body will love these activities just as you will love yourself more!
Tuesday, August 27, 2019
Get Your Brain Activated
The following are some tips to keep your brain operating at maximum capacity:
- Mental flex – keep your hands busy as well as your mind – knit, crochet, paint, color…
- Call a friend or family member today and share a happy story with him or her.
- Tell the world why brain health is important to you and your well-being.
- Encourage friends to become involved with keeping a healthy, active brain
- Enjoy a home-cooked meal - too much eating out is not good for your health
- Get your body in the game - get rolling in some action
- Do not be sedentary but rather be up and moving - good for the body and the soul
- Complete 3 yoga poses morning and evening plus 3 focused breathing sessions – in through the nose and out through the mouth for 1 minute.
Fully knowing and understanding your family medical history now – to the best of your abilities – will impact not only your health, but the health of most of your family members. You might know your family tree, but now it’s time to learn your family medical history. Schedule time to sit down with your relatives to learn more about the health risks you might face. Write down what you learn and keep a file for your records.
Thursday, August 15, 2019
Ouch! That Hurts!!
Ouch! is a video supplied to me by the Alzheimer's Association. In a quick 12 minutes, viewers observe scenarios and listen to conversations that include language that can be hurtful, indiscreet, and just plain wrong. While none of these snippets directly speak to Alzheimer's, they cover a wide range of inappropriate comments that people may make, things like, "You don't have an accent!" (when the speaker appears to be non-white) or "Sally can work overtime - she doesn't have any kids." The film provides optional responses when someone's comment is hurtful.
First, and I often struggle with this, is assume there is only good intent. Sometimes phrases are so common place that the speaker does not even realize the implications. This is your chance to respond with, "Using the word dementia that way makes it sound contagious and frightening. Dementia has so many more aspects."
The second option is ask a question, "Have you ever thought about that saying 'go back to your country' cause mean trauma, fear, and heartache? Many humans who you have grouped together are refugees who have fled brutality and possible execution."
Third choice, interrupt and redirect, "Talking about Joe without him here to intervene is demeaning. Let's wait until the three of us can sit down and talk this out together.:
Make the statement individual, "When you say all employees are bigoted and uneducated, do you include me in that category?"
And finally, when words of explanation escape the brain, there is the option of just replying, "Ouch!" That short word says so much and exemplifies the pain, the humiliation, the trepidation that negative remarks involve.
First, and I often struggle with this, is assume there is only good intent. Sometimes phrases are so common place that the speaker does not even realize the implications. This is your chance to respond with, "Using the word dementia that way makes it sound contagious and frightening. Dementia has so many more aspects."
The second option is ask a question, "Have you ever thought about that saying 'go back to your country' cause mean trauma, fear, and heartache? Many humans who you have grouped together are refugees who have fled brutality and possible execution."
Third choice, interrupt and redirect, "Talking about Joe without him here to intervene is demeaning. Let's wait until the three of us can sit down and talk this out together.:
Make the statement individual, "When you say all employees are bigoted and uneducated, do you include me in that category?"
And finally, when words of explanation escape the brain, there is the option of just replying, "Ouch!" That short word says so much and exemplifies the pain, the humiliation, the trepidation that negative remarks involve.
Wednesday, August 7, 2019
Vulnerability
Well, a month plus has passed and finally I am returning to this blog. I just completed listening to the audio of Dr. Brene Brown's, The Power of Vulnerability. While I first started it as a sort of "self-help" recommended by my daughter, I have found Brown's to hold so much more. Listening and then re-listening and taking notes, has really opened my eyes to me, my reactions, my ways of thinking and doing, leading to a better understanding of myself and of those around me. The big takeaway (for today, at least) is vulnerability, the vulnerability we feel when deciding to open up a discussion about our own cognitive decline or the decline of someone we love.
We are vulnerable when we toss out a "hot topic" as we quickly thumb through so many possible reactions in our heads: Will the listener be scared? Will the listener have too much advice? Will the listener turn away and run? Will the listener pass judgment and then I will find myself on the fringes of my own problem?
It takes bravery to step forward with honesty and determination. It takes courage to ask someone to pull back on the reins and just listen, not jump in with advice. It takes gumption to speak up about the unknown. It takes a special friend to really hear, ponder, and care.
I have a group called "Let's Talk About It". Although I have been trying to build this group for nearly one year, it is still in the fledgling stages. At times I have several attendees, but primarily it is only me and maybe a casual drop-in. As I have wondered about how to expand this outreach, I realize now how vulnerable people must feel when deciding to open up on a painful topic such as Alzheimer's or other dementia. I must continue to be kind, to exude trust, to let people know of my group, and then to hope I can make a difference and be that special friend that someone needs.
We are vulnerable when we toss out a "hot topic" as we quickly thumb through so many possible reactions in our heads: Will the listener be scared? Will the listener have too much advice? Will the listener turn away and run? Will the listener pass judgment and then I will find myself on the fringes of my own problem?
It takes bravery to step forward with honesty and determination. It takes courage to ask someone to pull back on the reins and just listen, not jump in with advice. It takes gumption to speak up about the unknown. It takes a special friend to really hear, ponder, and care.
I have a group called "Let's Talk About It". Although I have been trying to build this group for nearly one year, it is still in the fledgling stages. At times I have several attendees, but primarily it is only me and maybe a casual drop-in. As I have wondered about how to expand this outreach, I realize now how vulnerable people must feel when deciding to open up on a painful topic such as Alzheimer's or other dementia. I must continue to be kind, to exude trust, to let people know of my group, and then to hope I can make a difference and be that special friend that someone needs.
Friday, June 21, 2019
The Longest Day
Today, June 21st, is, of course, the longest day - more sunlight and bright light than any other day of the year in the northern hemisphere. The Alzheimer's Association recognizes that for caregivers and those with Alzheimer's and other dementias, the Longest Day may very well be every day. As these diseases progress, the cognition of the loved one diminishes as the needs expand and grow. What once took just a few minutes, like putting on shoes, for example, can turn into a wrestling match of a half hour. I naturally recommend that you abandon any shoe-putting-on to a very short time. If you are having to force and shove, wedge and push, anxiety will surely increase making the task harder and perhaps even impossible. Resolve that the shoe task is ridiculous and then revert to slippers, simple slip-ons, or bare feet if appropriate. Making life simpler is an excellent way to decrease stress and confusion.
Your community probably has events planned in conjunction with the Alzheimer's Association. These activities fund Alzheimer's research through generous donations from individuals and groups. Contact me to learn more about our Arts and Crafts Extravaganza tomorrow and our Sprint Triathlon July 4th or visit www.adf-winnemucca.com
If a group event is not to your liking, try some random acts of kindness for someone (or someones!) you care about - a walk, lunch out, a shopping spree, an ice cream cone. You can truly light up the life of someone who is isolated, lonely, and in need of personal connection. Caregivers and those receiving care both deserve special recognition and thoughtful gestures.
Your community probably has events planned in conjunction with the Alzheimer's Association. These activities fund Alzheimer's research through generous donations from individuals and groups. Contact me to learn more about our Arts and Crafts Extravaganza tomorrow and our Sprint Triathlon July 4th or visit www.adf-winnemucca.com
If a group event is not to your liking, try some random acts of kindness for someone (or someones!) you care about - a walk, lunch out, a shopping spree, an ice cream cone. You can truly light up the life of someone who is isolated, lonely, and in need of personal connection. Caregivers and those receiving care both deserve special recognition and thoughtful gestures.
Friday, June 7, 2019
Do Drug Companies Have an Obligation?
It was recently reported the Pfizer discovered that their drug, Enbrel, an anti-inflammatory used to treat rheumatoid arthritis ,appeared to lower the risk of Alzheimer's disease by 64%. This is a staggering number, especially when you consider that there are over 6 million people in the US diagnosed with this disease and that this number increases every day. With no cure, no prevention, and no reversal drugs currently available, doesn't it seem like a large pharmaceutical would leap at the opportunity to have a powerful effect on the lives of so many?
Instead, Pfizer decided not to release their findings. In fact, as quoted from the Washington Post, "Enbrel could potentially safely prevent, treat, and slow progression of Alzheimer's disease." However, a clinical trial would cost at least $80 million, and so the subject was dropped. It is one thing to decide that the trial was just too expensive; it is quite another to have the research available and refuse to release it, to just stay quiet about this potential miracle.
Does Pfizer have a moral obligation, an ethical responsibility to release their information? With 500,000 new diagnoses of Alzheimer's disease every year it just seems right to share this remarkable discovery with other scientists and drug companies. Perhaps because Enbrel's patent is expiring soon the company did not see the possibilities of profits, even against the capital outlay for clinical trials. I'd guess that they would have reaped billions had they worked to uncover a cure.
Should someone fearing Alzheimer's disease begin taking Enbrel? Currently there is not enough evidence to support beginning this drug regime, however, at the very least, I hope Pfizer will reveal all of their research findings so that a cure for this dreadful disease can be found.
Instead, Pfizer decided not to release their findings. In fact, as quoted from the Washington Post, "Enbrel could potentially safely prevent, treat, and slow progression of Alzheimer's disease." However, a clinical trial would cost at least $80 million, and so the subject was dropped. It is one thing to decide that the trial was just too expensive; it is quite another to have the research available and refuse to release it, to just stay quiet about this potential miracle.
Does Pfizer have a moral obligation, an ethical responsibility to release their information? With 500,000 new diagnoses of Alzheimer's disease every year it just seems right to share this remarkable discovery with other scientists and drug companies. Perhaps because Enbrel's patent is expiring soon the company did not see the possibilities of profits, even against the capital outlay for clinical trials. I'd guess that they would have reaped billions had they worked to uncover a cure.
Should someone fearing Alzheimer's disease begin taking Enbrel? Currently there is not enough evidence to support beginning this drug regime, however, at the very least, I hope Pfizer will reveal all of their research findings so that a cure for this dreadful disease can be found.
Thursday, June 6, 2019
Final Decisions and Hospice Care
Our guest presenter at our last Alzheimer's Support Group, Olyna Hughes, shared many ideas for making end-of-life easier, calmer, less painful, and meeting the requests and desires of the one who is passing away. With discussions in advance, especially during the early stages of Alzheimer's disease and other dementias when cognition is fairly stable and engaged, family members, friends and neighbors, physicians and first responder, can ease one into death without unnecessary drama, arguments, or confusion.
The first step is completing a POLST. This legal document works in every state and takes over for advance directives when the individual is no longer able to make medical decisions. Completed and then signed by a physician, PA, or APN (and sometimes RNs), this hot pink paper cannot be reproduced, is binding, and lasts until the end of life. Have I completed one? No, not yet. My excuse is that I rarely visit a doctor; my promise is to add it right now to my "to do" list right now. (I just did!)
As someone dies from Alzheimer's disease or other dementias, the trail may long, confusing and treacherous as the loved one melts away day by day over what may be many, many years. When this person can no longer speak for him/herself, it is gratifying to know that wishes have already been stated - orally and in writing - which along with the POLST insures that heroic measures such as unnecessary surgery and medications, intubation and other mechanicals, can be halted before they happen for making the end of life better.
Why the concern? When EMTs and emergency room staff are called, their job is to save a life - regardless of the wishes of a life-threatening disease. Once they start, it is difficult to put an end to medical procedures. Then even more heart-wrenching decisions may ensue as a loved determines to stop a breathing machine or other medical apparatus. Being wise in advance is terrific!
The first step is completing a POLST. This legal document works in every state and takes over for advance directives when the individual is no longer able to make medical decisions. Completed and then signed by a physician, PA, or APN (and sometimes RNs), this hot pink paper cannot be reproduced, is binding, and lasts until the end of life. Have I completed one? No, not yet. My excuse is that I rarely visit a doctor; my promise is to add it right now to my "to do" list right now. (I just did!)
As someone dies from Alzheimer's disease or other dementias, the trail may long, confusing and treacherous as the loved one melts away day by day over what may be many, many years. When this person can no longer speak for him/herself, it is gratifying to know that wishes have already been stated - orally and in writing - which along with the POLST insures that heroic measures such as unnecessary surgery and medications, intubation and other mechanicals, can be halted before they happen for making the end of life better.
Why the concern? When EMTs and emergency room staff are called, their job is to save a life - regardless of the wishes of a life-threatening disease. Once they start, it is difficult to put an end to medical procedures. Then even more heart-wrenching decisions may ensue as a loved determines to stop a breathing machine or other medical apparatus. Being wise in advance is terrific!
Monday, May 27, 2019
Inspiring Projects
I am a super lover of projects. Whether these are art, exercise, and fun pursuits or major work events, I just enjoy being engaged. With a loved one with dementia or Alzheimer's there are many things you can do to keep him/her involved and delighted.
Most people love games. In our respite retreat held twice monthly (hopefully moving this fall to every Monday), we play Yahtzee, dominoes, simple rummy, and Scrabble. The first is quick and easy - roll some dice and select what to save. It is engaging yet not too challenging. I love the way we all celebrate the success of other players - a Yahtzee for 1 is a Yahtzee for all. One of our respite attendees discussed having played Yard Yahtzee with giant dice. I need to check this one out for an out-of-doors play-day bit of fun.
Dominoes has been perfect, too. Just like rummy, most people have played dominoes before and just about everyone has their own set of rules. I love rule adjustment to fit the situation so these two games match well will our respite attendees and facilitators. We prefer the dominoes with large dots (and chips up to the double 6). They are easy to see and make for better involvement than the dominoes sets that go to double 12. The smaller game moves quickly and that's nice when we have time constraints.
Scrabble sometimes requires assistance for the loved one with dementia, but that's okay, too. I enjoy just playing letters where appropriate whether it is my turn or my partner's. We are still talking and spelling words, good exercises for the brain.
The most valuable asset of any game is the socialization that occurs. Chatter and interaction are key to good health and happiness. Games bring these out in a fantastic way.
Most people love games. In our respite retreat held twice monthly (hopefully moving this fall to every Monday), we play Yahtzee, dominoes, simple rummy, and Scrabble. The first is quick and easy - roll some dice and select what to save. It is engaging yet not too challenging. I love the way we all celebrate the success of other players - a Yahtzee for 1 is a Yahtzee for all. One of our respite attendees discussed having played Yard Yahtzee with giant dice. I need to check this one out for an out-of-doors play-day bit of fun.
Dominoes has been perfect, too. Just like rummy, most people have played dominoes before and just about everyone has their own set of rules. I love rule adjustment to fit the situation so these two games match well will our respite attendees and facilitators. We prefer the dominoes with large dots (and chips up to the double 6). They are easy to see and make for better involvement than the dominoes sets that go to double 12. The smaller game moves quickly and that's nice when we have time constraints.
Scrabble sometimes requires assistance for the loved one with dementia, but that's okay, too. I enjoy just playing letters where appropriate whether it is my turn or my partner's. We are still talking and spelling words, good exercises for the brain.
The most valuable asset of any game is the socialization that occurs. Chatter and interaction are key to good health and happiness. Games bring these out in a fantastic way.
Tuesday, May 21, 2019
So What Can You Do to Help Isolated People?
There are many possibilities for helping those who are so alone and isolated, whether by choice or by life events. Flexibility is key as every individual is different, has different needs, and will accept your friendship in a unique way. Multiple tries accompanied with multiple approaches may well be necessary.
1. If you already have a friendship with someone now residing alone, nourish and rekindle it. There is a past to build on; a future to create.
2. Schedule time for your friend. I know at times when I look at my planner I gasp in disbelief as it seems every minute is booked. Think about where you can free up time like sharing breakfast, enjoying a walk and talk, or heading out to a movie or other in-common event.
3. Become a volunteer. Many organizations are frantically seeking volunteers to assist in a multitude of ways. Volunteering to visit in a home provides the opportunity for friendship to blossom and happiness to bloom.
If it is you who is feeling lonely...
1. Get involved. Maybe you feel nervous about venturing into the volunteer arena, so join a group with endeavors you enjoy - you will find that you help your own soul while also helping others as you expand ideas, keep busy, and grow. It can really become a self-discovery adventure.
2. Join clubs or organizations, take a class in a challenging subject, begin a new hobby like playing the guitar or gardening. It may take time to find the perfect pursuit but it is out there somewhere just waiting for your engagement.
3. Meet new people. Oh, this can be a tough one, especially when you are feeling alone, maybe even desperately alone, and venturing out is just plain frightening. It can take time to wiggle yourself into a new group in a new environment. Libraries often offer book clubs - there's a start. Service organizations like Lions Club and Rotary always want new members - there's a second start. School frequently need volunteers to read to students or chaperone events - there might be something interesting to reflect on.
Happy day to you as you seek to eradicate loneliness and isolation and transform it into joyful experiences.
1. If you already have a friendship with someone now residing alone, nourish and rekindle it. There is a past to build on; a future to create.
2. Schedule time for your friend. I know at times when I look at my planner I gasp in disbelief as it seems every minute is booked. Think about where you can free up time like sharing breakfast, enjoying a walk and talk, or heading out to a movie or other in-common event.
3. Become a volunteer. Many organizations are frantically seeking volunteers to assist in a multitude of ways. Volunteering to visit in a home provides the opportunity for friendship to blossom and happiness to bloom.
If it is you who is feeling lonely...
1. Get involved. Maybe you feel nervous about venturing into the volunteer arena, so join a group with endeavors you enjoy - you will find that you help your own soul while also helping others as you expand ideas, keep busy, and grow. It can really become a self-discovery adventure.
2. Join clubs or organizations, take a class in a challenging subject, begin a new hobby like playing the guitar or gardening. It may take time to find the perfect pursuit but it is out there somewhere just waiting for your engagement.
3. Meet new people. Oh, this can be a tough one, especially when you are feeling alone, maybe even desperately alone, and venturing out is just plain frightening. It can take time to wiggle yourself into a new group in a new environment. Libraries often offer book clubs - there's a start. Service organizations like Lions Club and Rotary always want new members - there's a second start. School frequently need volunteers to read to students or chaperone events - there might be something interesting to reflect on.
Happy day to you as you seek to eradicate loneliness and isolation and transform it into joyful experiences.
Wednesday, May 8, 2019
Some of the Hazards of Social Isolation
As discussed previously, a little time alone is good for us to think, regroup, and enjoy solitude. Too much time alone, however, can cause mental and physical damage. Now the mental part is easy to get. When you are alone all of the time, you do not share conversation, bounce ideas around with others, play in a group, laugh uproariously with friends, or divulge secrets, concerns, and deep thoughts. All of these are snuffed out because of a lack of interconnectedness with others. Research has shown that mental health deteriorates through lack of associations and may even lead to early onset dementia.
You can probably pull up an image of a cranky old woman who lived in an apparently haunted house, who growled and snarled and rarely muttered a peep. She lived across the street from me when I was little and while my image may be completely false in reality, it is the first that comes to mind when I think of dementia, forgetfulness, and treacherous behavior. I realize now that maybe had I said hello, provided her with a bouquet of flowers, or just smiled and waved I might have brought her some happiness and peace of mind. Loneliness is an awesome pain.
According to Connect2Affect of AARP isolation has additional negative side effects including increased susceptibility to the flu (poor eating and hygiene may play into this), high blood pressure (poor eating and lack of exercise may factor in here), and the risk of heart disease (poor eating, lack of exercise, inability or desire to access health care all lead to increased illness).
Having friends and socializing make a positive difference in outlook as well as health. This does not mean all-out, full-time, every-second-of-the-day togetherness, but it does mean daily - hopefully several times per day - moments of connectivity with vital family members and friends.
You can probably pull up an image of a cranky old woman who lived in an apparently haunted house, who growled and snarled and rarely muttered a peep. She lived across the street from me when I was little and while my image may be completely false in reality, it is the first that comes to mind when I think of dementia, forgetfulness, and treacherous behavior. I realize now that maybe had I said hello, provided her with a bouquet of flowers, or just smiled and waved I might have brought her some happiness and peace of mind. Loneliness is an awesome pain.
According to Connect2Affect of AARP isolation has additional negative side effects including increased susceptibility to the flu (poor eating and hygiene may play into this), high blood pressure (poor eating and lack of exercise may factor in here), and the risk of heart disease (poor eating, lack of exercise, inability or desire to access health care all lead to increased illness).
Having friends and socializing make a positive difference in outlook as well as health. This does not mean all-out, full-time, every-second-of-the-day togetherness, but it does mean daily - hopefully several times per day - moments of connectivity with vital family members and friends.
Monday, May 6, 2019
Social Isolation
Many people as they age find themselves in social isolation. Social isolation means being left out, whether by choice or by circumstances, of a regular social network. While some enjoy the consistency of being alone, humans are, overall social. We like to gather, chat, engage, and share in conversation and camaraderie.
My father-in-law really liked his social isolation. Living on a farm with the closest neighbor 5 miles away and us, his family, 120 miles away, seemed fine for him. His isolation went beyond what many might consider normal: 20 miles away from the nearest phone, 60 miles from groceries, gas, or supplies, and just 1, very hazy television station for world connection. He liked the quiet, the peace afforded him with just a dog and some livestock to keep him company. While we visited almost every weekend and all summer long, he loved to see us come and I am certain he loved to see us go. I believe he is an exception to the social rule of isolation by choice.
Through hospice, I interacted with several individuals, several of whom lived in isolation. While some had spouses/significant others, they had made errors in judgment during life that had caused all other family members and friends to pull away. Most often this withdrawal included drugs and imprisonment, but as life reached an end, they longed for reconnecting and begin forgiveness. Reconnections rarely ensued. I, as an outsider, became more family-like than blood relations. It was heartbreaking to watch each one die of a broken heart because mending had become impossible.
My next three blogs will add more background information on loneliness, social isolation, and potential remedies.
My father-in-law really liked his social isolation. Living on a farm with the closest neighbor 5 miles away and us, his family, 120 miles away, seemed fine for him. His isolation went beyond what many might consider normal: 20 miles away from the nearest phone, 60 miles from groceries, gas, or supplies, and just 1, very hazy television station for world connection. He liked the quiet, the peace afforded him with just a dog and some livestock to keep him company. While we visited almost every weekend and all summer long, he loved to see us come and I am certain he loved to see us go. I believe he is an exception to the social rule of isolation by choice.
Through hospice, I interacted with several individuals, several of whom lived in isolation. While some had spouses/significant others, they had made errors in judgment during life that had caused all other family members and friends to pull away. Most often this withdrawal included drugs and imprisonment, but as life reached an end, they longed for reconnecting and begin forgiveness. Reconnections rarely ensued. I, as an outsider, became more family-like than blood relations. It was heartbreaking to watch each one die of a broken heart because mending had become impossible.
My next three blogs will add more background information on loneliness, social isolation, and potential remedies.
Wednesday, May 1, 2019
Loneliness and Dementia
As an Alzheimer's disease support group facilitator I am required to have my attendees complete an annual survey that is shared with our local Alzheimer's Association as well as then sent on to national headquarters. These are private - no names required - and to maintain privacy of my group members, sometimes I scan a few of the answers and on other years I simply slip them into the mailer and send them on their way.
One of the questions I glanced at this year asked about loneliness, something like, "Does attending a support group help you fend off loneliness or the sense of being alone?" I felt I had been doing a fairly good job about welcoming, caring for, and assisting my caregivers, but their responses reflected the deep loneliness they felt as they traveled the Alzheimer's Trail.
I thought deeply about this - What can I do? How can I change this sense of aloneness? What is truly meant by loneliness? While I will include these questions during discussion at my support group meeting next week, for now I am left with pondering this emotional hole. First, what is loneliness? Is it the alone feeling that remains as a loved one descends into the depths of dementia? Is it the sense of abandonment as family members shy away from encounters with the loved one with dementia? Is it the blasts of advice that are delivered by (primarily) well-meaning friends when just a compassionate pat or hug would do so much more to alleviate the pain? Is it feeling alone in a crowd? Is it feeling alone when in a solitary place? Is it a state of mind or a state of being?
Loneliness and aloneness will be the focus of next few blogs. If you have insight and information to share, please do so. Thanks in advance.
One of the questions I glanced at this year asked about loneliness, something like, "Does attending a support group help you fend off loneliness or the sense of being alone?" I felt I had been doing a fairly good job about welcoming, caring for, and assisting my caregivers, but their responses reflected the deep loneliness they felt as they traveled the Alzheimer's Trail.
I thought deeply about this - What can I do? How can I change this sense of aloneness? What is truly meant by loneliness? While I will include these questions during discussion at my support group meeting next week, for now I am left with pondering this emotional hole. First, what is loneliness? Is it the alone feeling that remains as a loved one descends into the depths of dementia? Is it the sense of abandonment as family members shy away from encounters with the loved one with dementia? Is it the blasts of advice that are delivered by (primarily) well-meaning friends when just a compassionate pat or hug would do so much more to alleviate the pain? Is it feeling alone in a crowd? Is it feeling alone when in a solitary place? Is it a state of mind or a state of being?
Loneliness and aloneness will be the focus of next few blogs. If you have insight and information to share, please do so. Thanks in advance.
Thursday, January 24, 2019
Inspiration from a 3-year Old
Hey! What's going on?
What's wrong?
I know there's something we can do.
It might not be clear and
That's why I''m here
Tell me what's bothering yo.
You've got something on your mind
Don't keep it inside
You know you're going to be fine
Hey! What's wrong?
I know there's something we can do.
Words from a song on Doc McStuffins
I was feeling a little sad, a little out of sorts, and maybe just a touch sick. While I thought I was covering it all up quite well, my grand-daughter approached me, patted my hand, and then tenderly sang this song. My first thought, What perception! My second thought was to really listen to the words. How important and how valuable to me - and to anyone who just needs some support or a pick-me-up.
Each time she sings to me, the words vary slightly, but the meaning remains to same, although maybe just a little more powerful because of the sweetness shared and the love reflected in her eyes. I have adopted this as my new theme song!
What's wrong?
I know there's something we can do.
It might not be clear and
That's why I''m here
Tell me what's bothering yo.
You've got something on your mind
Don't keep it inside
You know you're going to be fine
Hey! What's wrong?
I know there's something we can do.
Words from a song on Doc McStuffins
I was feeling a little sad, a little out of sorts, and maybe just a touch sick. While I thought I was covering it all up quite well, my grand-daughter approached me, patted my hand, and then tenderly sang this song. My first thought, What perception! My second thought was to really listen to the words. How important and how valuable to me - and to anyone who just needs some support or a pick-me-up.
Each time she sings to me, the words vary slightly, but the meaning remains to same, although maybe just a little more powerful because of the sweetness shared and the love reflected in her eyes. I have adopted this as my new theme song!
Sunday, January 20, 2019
Getting Your Proverbial Ducks in a Row
While dying and death are difficult topics, topics that it are usually hard for each of us to talk about and even harder for many loved ones to listen to, being informed and prepared is vital. While of "sound mind and body" we can express wishes, divide an estate, and communicate our desires. Waiting may mean a physical and/or mental decline that prevents us from sharing our intents and means that survivors may not know just exactly what we really wanted at the end of life.
Considerations:
Do you have a will? I've been advised that a "simple will" is not only simpler, but it can cover just about all aspects of an estate. This will caries who gets what and also how assets are divided, such as "Sell the house" and divide the proceeds; Fred gets the car and Rosie receives the pick-up. I did not realize until recently that step-children fall outside of the realm of regular inheritance unless they are named specifically as recipients or unless they have been adopted. With many blended families, stipulating inheritance increases in importance. I was also advised that for all smaller items like, "Mother's bookcase" or "Great Uncle Jim's gun collection", an attached sheet on the will that can be removed and replaced as times and circumstances change is far better than having every item listed in the will that has been witnessed and notarized. In the latter, a formal process is necessary to make desired adjustments.
So there is your assignment for the week: Get that will in order and processed. Whether an online document is downloaded or an appointment with a lawyer or CPA is deemed best, do it now. This enables a far easier transition for those who come after.
Considerations:
Do you have a will? I've been advised that a "simple will" is not only simpler, but it can cover just about all aspects of an estate. This will caries who gets what and also how assets are divided, such as "Sell the house" and divide the proceeds; Fred gets the car and Rosie receives the pick-up. I did not realize until recently that step-children fall outside of the realm of regular inheritance unless they are named specifically as recipients or unless they have been adopted. With many blended families, stipulating inheritance increases in importance. I was also advised that for all smaller items like, "Mother's bookcase" or "Great Uncle Jim's gun collection", an attached sheet on the will that can be removed and replaced as times and circumstances change is far better than having every item listed in the will that has been witnessed and notarized. In the latter, a formal process is necessary to make desired adjustments.
So there is your assignment for the week: Get that will in order and processed. Whether an online document is downloaded or an appointment with a lawyer or CPA is deemed best, do it now. This enables a far easier transition for those who come after.
Sunday, January 13, 2019
Being Kind - Reflections of Fred Rogers
I recently finished the biography of Fred Rogers, the famous Mr. Rogers of the Neighborhood. The opening begins with this quote:
There are three ways to ultimate success:
The first way is to be kind.
The second way is to be kind.
The third way is to be kind.
Wow! Doesn't that seem simple. And yet it seems that being kind, especially being kind in that gentle, loving way of Fred Rogers, is a challenging endeavor. Should it be? I think not, however, for me when things get rough, when someone has been tough, when I am feeling blue, my initial reactions are shock and disappoint, but then it seems I quickly move to anger then resignation. At I time when I need to shine my brightest and kindest, I duck and cover and try to heal and forget.
So kindness in all situations, meetings, and interactions has been added to my New Year's Resolutions.
When someone rejects my ideas, I will show appreciation of the opinion and most often accept that no matter what I do, the other person will not budge in my direction. I will be kind.
When someone spits anger at my suggestions, I will nod in a knowing way while accepting that things most probably will not change. I will be kind.
When someone stomps on my heart to break my will, I will ever-so-slightly grit my teeth, smile as I realize my current tact is of no avail. I will be kind.
And finally, I will strive to demonstrate kindness as I show appreciation and acceptance of a differing viewpoint, and quickly regroup my beliefs and values and plunge forward.
Fred Rogers' book came to me after a bleak and hurtful response from a board to whom I had hoped to offer a terrific product. I have searched high and low for a suitable solution to this dilemma, a way to clarify and clear misconceptions, and I know above all I must be kind. Minds are set; my explanations will not resonate; my reasoning will be ripped.
Yep. You guessed it. I will be kind as a calmly exit the scene.
There are three ways to ultimate success:
The first way is to be kind.
The second way is to be kind.
The third way is to be kind.
Wow! Doesn't that seem simple. And yet it seems that being kind, especially being kind in that gentle, loving way of Fred Rogers, is a challenging endeavor. Should it be? I think not, however, for me when things get rough, when someone has been tough, when I am feeling blue, my initial reactions are shock and disappoint, but then it seems I quickly move to anger then resignation. At I time when I need to shine my brightest and kindest, I duck and cover and try to heal and forget.
So kindness in all situations, meetings, and interactions has been added to my New Year's Resolutions.
When someone rejects my ideas, I will show appreciation of the opinion and most often accept that no matter what I do, the other person will not budge in my direction. I will be kind.
When someone spits anger at my suggestions, I will nod in a knowing way while accepting that things most probably will not change. I will be kind.
When someone stomps on my heart to break my will, I will ever-so-slightly grit my teeth, smile as I realize my current tact is of no avail. I will be kind.
And finally, I will strive to demonstrate kindness as I show appreciation and acceptance of a differing viewpoint, and quickly regroup my beliefs and values and plunge forward.
Fred Rogers' book came to me after a bleak and hurtful response from a board to whom I had hoped to offer a terrific product. I have searched high and low for a suitable solution to this dilemma, a way to clarify and clear misconceptions, and I know above all I must be kind. Minds are set; my explanations will not resonate; my reasoning will be ripped.
Yep. You guessed it. I will be kind as a calmly exit the scene.
Saturday, January 12, 2019
POLST
I have received several emails from POLST. Not recognizing the acronym, I decided it was political in nature and so have deleted each message as quickly as it arrived. Last week, however, I learned that POLST stands for Physicians Order for Life-Sustaining Treatments. While this does not exist in every state, we have this wonderful service in Nevada. The papers involved, signed by your primary care doctor, list the types of treatment - if any - you would want if you were incapacitated.
While Advance Directives may state, "no heroics", when paramedics arrive it is their job and responsibility to save a life, regardless of the individuals wishes. Since these wishes cannot be communicated by someone who is incapacitated, someone seeking an end-of-life-choice for a terminal illness may be revived. POLST prevents this. Paramedics may have been called out of frenzy and fear, but these papers, usually pink or red, posted in a conspicuous place like the refrigerator mean the paramedics know and understand your wishes, they will fulfill them, and a quiet death may ensue rather than frantic pounding and beating on a body whose life is near its end.
I do not mean to sound cold here, but when someone has decided that pain and suffering and medication and surgery are not a solution but an aggravation to a problem, it is important to listen, allow, and permit an individual's decision.
While Advance Directives may state, "no heroics", when paramedics arrive it is their job and responsibility to save a life, regardless of the individuals wishes. Since these wishes cannot be communicated by someone who is incapacitated, someone seeking an end-of-life-choice for a terminal illness may be revived. POLST prevents this. Paramedics may have been called out of frenzy and fear, but these papers, usually pink or red, posted in a conspicuous place like the refrigerator mean the paramedics know and understand your wishes, they will fulfill them, and a quiet death may ensue rather than frantic pounding and beating on a body whose life is near its end.
I do not mean to sound cold here, but when someone has decided that pain and suffering and medication and surgery are not a solution but an aggravation to a problem, it is important to listen, allow, and permit an individual's decision.
Sunday, January 6, 2019
10 Ways to Assist a Family Living with Alzheimer's
The following 10 items have been identified by the Alzheimer's Association as excellent ways to help a family living with this dreadful disease.
1. Educate yourself by learning about the effects and how to best respond.
2. Stay in touch with cards, phone calls and visits to demonstrate that you care.
3. Be patient knowing that Alzheimer's is an ongoing process and that each person reacts differently.
4. Offer a friendly shoulder to lean on to help alleviate stress.
5. Engage the person with dementia in meaningful conversation.
6. Offer assistance with the family to-do list such as preparing a meal, running errands, or providing a ride.
7. Engage family members in activities - a walk, a board game, a trip to the zoo...
8. Provide a reprieve by offering time so that caregivers can have some time alone or visiting friends.
9. Be flexible and avoid getting frustrated if individuals do not immediately accept help. It takes times to assess needs.
10. Get involved by becoming an Alzheimer's Advocate or participating the awareness events like the Turkey Trot or the Longest Day.
1. Educate yourself by learning about the effects and how to best respond.
2. Stay in touch with cards, phone calls and visits to demonstrate that you care.
3. Be patient knowing that Alzheimer's is an ongoing process and that each person reacts differently.
4. Offer a friendly shoulder to lean on to help alleviate stress.
5. Engage the person with dementia in meaningful conversation.
6. Offer assistance with the family to-do list such as preparing a meal, running errands, or providing a ride.
7. Engage family members in activities - a walk, a board game, a trip to the zoo...
8. Provide a reprieve by offering time so that caregivers can have some time alone or visiting friends.
9. Be flexible and avoid getting frustrated if individuals do not immediately accept help. It takes times to assess needs.
10. Get involved by becoming an Alzheimer's Advocate or participating the awareness events like the Turkey Trot or the Longest Day.
Wednesday, January 2, 2019
What an Early-Stage Alzheimer's Individual Hopes You Understand
from the Alzheimer's Association publication "Understanding is the first step to helping".
- I am still the same person I was before my diagnosis.
- My independence is valuable; ask me what I am still comfortable doing and with what I may need help.
- Keep me engaged by inviting me to participate is activities we both enjoy.
- Don't make assumptions - every person is effected differently by Alzheimer's disease.
- Ask me how I am doing. I am living with a disease just like cancer or heart disease.
- talk to me directly to involve me in meaningful conversation.
- Don't pull away or hide. It's OK if you do not know what to do or say. Just be my friend.
Realize that my family may need time to adjust. The larger the family, the more interpretations that may exist. We need time to ourselves and we need time with you. Stay connected with us. Know that every kind gesture is appreciated.
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