Sandra Day O’Connor’s farewell letter is a plea for country before party

By Ephrat Livni22 minutes ago


Sandra Day O’Connor is not an average American, and there’s plenty of evidence to support this contention.


For one, she was the first woman to serve on the US Supreme Court, appointed in 1981 by Ronald Reagan. And she’s remained active in public life even after her retirement in 2006, committed to advancing civic learning and sharing her passion for the US Constitution and the government it lays out. Today (Oct. 23), she announced she’s stepping out of the limelight because she’s been diagnosed with the beginning stages of dementia and probably has Alzheimer’s disease.


In a sort of farewell letter to the nation (pdf), she urges the rest of us to take up the cause of active citizenship that she can no longer devote herself to entirely, writing:


I feel so strongly about the topic because I’ve seen first-hand how vital it is for all citizens to understand our Constitution and unique system of government, and participate actively in their communities. It is through this shared understanding of who we are that we can follow the approaches that have served us best over time–working collaboratively together in communities and in government to solve problems, putting country and the common good above party and self-interest, and holding our key governmental institutions accountable.


O’Connor, 88, is a pioneer in more ways than one. In 2010, she started iCivics, a non-profit institution that provides free civics games and tutorials to students online and creates lesson plans for teachers in classrooms. On the site, she explains the project, saying, “The practice of democracy is not passed down through our gene pool. It must be taught and learned anew by each generation of citizens.”


In her letter today O’Connor called on all Americans to commit to the project of democracy by engaging in their communities and participating. “It’s not enough to understand, you’ve got to do something,” she writes.


If anyone is in a position to say this, it’s O’Connor, who as a self-described “young cowgirl from the Arizona desert” never could have imagined becoming the first woman on the high court. “I hope that I have inspired young people about civic engagement and helped pave the pathway for women who may have faced obstacles pursuing their careers,” she writes. “While the final chapter of my life with dementia may be trying, nothing has diminished my gratitude and deep appreciation for the countless blessings in my life.”


In response to O’Connor’s announcement, chief justice John Roberts issued a brief statement (pdf), writing that he is saddened by the news but “not at all surprised” that she used the moment “to think of our country first, and to urge an increased commitment to civics education, a cause to which she devoted so much of her time and indomitable energy.” He called her “a towering figure in the history of the United States and indeed the world” and “a role model not only for girls and women, but for all those committed to equal justice under law.”


Roberts concluded, that “no illness or condition can take away the inspiration she provides for those who will follow the many paths she has blazed.” It’s a sentiment that everyone can agree with—whatever their political affiliation.

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5 Tips for Communicating with Someone with Alzheimer’s

Did you know that 5.5 million Americans are currently living with Alzheimer’s disease? Communicating with someone diagnosed with Alzheimer’s can be challenging and often create frustration. However, communication is possible if you remain patient, avoid distractions, avoid pointing out mistakes, utilize nonverbal communication, and keep it simple. Read about these tips in more detail below.

5 Tips to Communicate Effectively

Be Patient

When communicating with someone with Alzheimer’s, make sure to prepare yourself before entering into a conversation. You need to be remain patient and know that it may become challenging. Do not raise your voice, show stress, or demonstrate frustration. Allow your loved one to take their time. Remember to listen and do not interrupt.

Avoid Distractions

Take away the distractions by having the conversation away from competing sights and sounds. You can do this by using a quiet room in the house (like a den or bedroom) so the attention is focused on you and not the T.V., the cars driving by, or other background noise. Doing so will at least create a clear pathway for talking.

Avoid Pointing Out Mistakes

You can easily get off topic or lose someone’s attention if you point out a mistake or correct something he or she said. Avoid this mistake and avoid arguing with your loved one.

Utilize Nonverbal Communication

Communication uses both verbal and nonverbal messaging. Try to use visual and nonverbal cues (i.e. hand gestures, facial expressions, etc.) to get your message across.

Keep the Conversation Simple

Depending on where the disease is in its progression, you may need to keep your sentences short and to the point. Eventually, as it progresses, you may need to keep your questions to yes or no answers. In addition, breakdown larger concepts into smaller, easier-to-understand talking points. For example, if you need to discuss a new medication – consider all of the items you need to communicate: the name of the medication, its purpose, why it’s happening, when it needs to be taken, how often, etc. Break down each of this and take time messaging it.

Remember not to take any issues or comments said personally. By being patient and showing respect to your loved one you can set the tone for the conversation.

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Letter From Vivian on Mother's Day

Hi, just wanted to let you know how Mom is doing, and say Happy Mother's Day. Many of you have told me this would not be easy, and boy you are so right. I look at Mom with such sadness and pity, and wish I could do more for her to make her pain go away.

Think of Mom when you say you can’t find anything to wear. It is sad for someone who had enough clothes to wear for the next 10 years and never wear the same thing twice. Now she is not able to dress herself. She was putting them on backwards or inside out. I was wondering why she didn't want to get out of her PJs, but watched her one morning,. She didn't know what to do with the clothes she had in her hands.

She wants to wear the same thing over and over again, because it is less painful to pick out something else. Now I dress her and make her look pretty. The next time you dress yourself and find something to wear, just be glad you know what to do with it and where it goes.

Think of Mom, the next time you take a nice warm bath and are enjoying it. Appreciate the fact that you’re not afraid of the water, that it feels so good to get nice and clean, and that you can get out of the tub on your own in privacy. (And that you can bathe alone.) The only time I enjoyed taking a shower with someone was when it was in a passionate moment and cleanliness was not the only thing on my mind.

My girlfriend, Jeannie, has helped me gather a lot of her clothes to donate to the people in need and to a church. We have filled 30 trash bags, and she still has more. I cried the first time I did it, but it gets easier now knowing that someone can use them. I cried, too, because I can’t fit in any of her things. She is so tiny, and I am so big.

The next time you go into a room and forget why you went there, think of Mom. She does it all the time, now! The only problem is that when we retrace our steps, we usually remember why;she doesn't.

She had more shoes than Imelda Marcos and can't wear them anymore because she can't walk without losing her balance. She sometimes sneaks in her room and puts on a pair of heels and just stands there, afraid to move. She has fallen a couple of times, but luckily she has not hurt herself. I don't know anyone that has feet small enough to wear them. If you know of someone let me know. Think of Mom the next time you put on your favorite pair of shoes and really enjoy how good they make you feel.

She is going blind in one eye, and the doctor is constantly testing her to see if she will need surgery for glaucoma. She looks for a new pair of glasses, but the ones she has are brand new. I look at her eyes, and they are so sad. She tries to cry, but her tear ducts are dry, and so no tears will come. I cry for her and have enough for the both of us. But she never sees me cry.

Think of Mom the next time you're at a dance and see a senior lady sitting and waiting to be asked. She is probably remembering when she was young like you, and burned up the floor at a ballroom somewhere, listening to a great big band, entering in jitterbug contests, a marathon, in her best dress that she can no longer fit into or is in the back in her closet of memories. Ask her to dance and give her a thrill again. It only takes the length of a song to make her happy. Mom used to go the old Sweets Ballroom in Oakland, Calif., and that is where she met my dad.

Mom asks me everyday if she can help me do something. I wish she could. She wants to wash dishes, but doesn’t know what the soap is for. If you come to my house, and you happen to see a dirty dish or glass in the cupboard, just take it out quietly and put it in the dishwasher for me for I missed that one.

Think of Mom when you want to go for a walk and then put it off because of one excuse or another. She never drove a car and loved to walk. She used to walk all over Hayward instead of taking the bus. She never asked anyone for a ride. Now she can’t walk anywhere without the aid of a walker or holding on to a wall.

Think of Mom when you remember the good times you had with your friends and family and can still laugh at the funny things you did with them, and you can still remember who they are. Even the bad, can be blessing, if you can remember it.

Enjoy the next book or magazine you read, and can remember it a day or two from now how much you liked it and how it enriched your life. Mom loves the magazines that she gets and reads the same ones over and over again. She enjoys them every time she reads them because to her, they are new stories. She’ll pick up the book ten minutes from now, and will read the same thing again. It does save money. I just hide them, and then in a week change them again.

I quit telling her or talking about the people that have died in the family because she goes through the loss each time. She still wants to visit her sister who has passed. She wants to visit her friend that died many years ago in Pennsylvania, too.

Enjoy your home and be thankful that you don’t have a mean daughter taking care of you. She keeps asking to go home because she has visited us too long. And her dog must be missing her. Your heart is where your home is, and I have broken her heart.

I hug her a lot, especially when I lose my cool and get angry because I think she doesn't want to behave. It is sad how our roles are reversed. Funny, I always wanted a child, and now I have one — and a defiant one at that. I still can’t tell when she is Mom or when ALZ takes over.

Please don't feel sorry for Mom or me. This is a choice she made; not talking to me about what to do if and when this was going to happen or preparing for her care. What would make me happy is to tell you, not to put your children through this. If at all possible, prepare yourself for when the time comes, if you are fortunate enough and foolishly want to live forever but your mind and body doesn’t want to do the same.

Write memories down or tell your children stories about yourself or your family, before you get too old and don’t remember the stories correctly. Even if your children aren’t interested now, maybe your grandchildren will want to know. Everyone has a story and yours is unique. Mom talks to people now, and tells stories about herself, but gets confused about whom she is talking about.

Mom still knows who I am, but I know that soon she won’t recognize me. Some Moms make bad choices, but who hasn’t. We live with the choices that we make. Who is to say what a good Mom is? It is up to the individual. If you are lucky enough to be a Mom (or Dad), be the best you can be. Maybe you are, only your children know. If you still have the chance, and think you need to do better, do it before it is too late. You don’t get another life to make it right.

If you have a Mom and she is healthy, be thankful if she can take care of herself. If she is ill or in a rest or convalescent home, don’t pass up the opportunity to visit and laugh with her. There might come a time when you will no longer have the chance. Hug her real tight and tell her how much you love her.

If you lost your Mom too soon, I am sorry. I just hope you had a chance to enjoy her when she was here.

I hope you miss her as much as I miss mine.

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Managing Stress While Caring For A Loved One With Alzheimer's

Create a calm and soothing environment
The environment and atmosphere you create while caregiving can play a large part in helping an Alzheimer’s patient feel calm and safe.

• Modify the environment to reduce potential stressors that can create agitation and disorientation in the Alzheimer’s patient. These include loud or unidentifiable noises, shadowy lighting, mirrors or other reflecting surfaces, garish or highly contrasting colors, and patterned wallpaper.
• Maintain calm within yourself. Getting anxious or upset in response to problem behavior can increase the patient’s stress or agitation. Respond to the emotion being communicated by the behavior, not the behavior itself. Try to remain flexible, patient, and relaxed. If you find yourself becoming anxious or losing control, take a time out to cool down.

 

Manage stress in an Alzheimer’s patient

Different stress-reducing techniques work better for some Alzheimer’s patients than others, so you may need to experiment to find the ones that best help your loved one.

• Exercise is one of the best stress-relievers for both the Alzheimer’s patient and you, the caregiver. Consult with your loved one’s physician to make sure it’s safe to participate in light exercise. Regular walking, movement, or seated exercises can have a positive effect on many problem behaviors, such as aggression, wandering, and difficulty sleeping. Indoor shopping malls are vast walking opportunities protected from the weather. Or you may even consider singing and dancing.
• Simple activities can be a way for the patient to reconnect with their earlier life. Someone who used to enjoy cooking, for example, may still gain pleasure from the simple chore of washing vegetables for dinner. Try to involve the person in as many productive daily activities as possible. Folding laundry, watering plants, or going for a drive in the country can all help to manage stress.
• Remembering the past may also help soothe the Alzheimer’s patient. Even if your loved one can’t remember what happened a few minutes ago, he or she may still clearly recall things from decades ago. Try asking general questions about the person’s distant past.
• Use calming music or play the person’s favorite type of music as a way to relax them when agitated. Music therapy can also help soothe the person during mealtimes and bath times, making the processes easier for both of you.
• Interacting with other people is still important. While large groups of strangers may only increase stress levels for an Alzheimer’s patient, spending time with different people in one-on-one situations can help to increase physical and social activity.
• Pets can provide a source of positive, nonverbal communication. The playful interaction and gentle touch from a well-trained, docile animal can help soothe an Alzheimer’s patient and decrease aggressive behavior. If you don’t have a pet of your own, see Resources section below for organizations that offer pet visits.

 

Take time to connect with the Alzheimer's patient

Taking the time to really connect with the person you’re caring for can release hormones that boost the patient’s mood and reduce stress. And it can have the same effect on you, too.

Even if the person you’re caring for can no longer communicate verbally, it’s important to take a short time when you’re at your calmest to focus fully on him or her. Avoid all distractions—such as the TV, cell phone, and computer—make eye contact (if that’s possible), hold the person’s hand or stroke his or her cheek, and talk in a calm, reassuring tone of voice. When you connect in this way, you’ll both experience a process that lowers stress and supports well-being.

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Living With Alzheimer's: Creating Your Coping Strategy

You may already be aware of changes in your ability to complete daily tasks that once came naturally to you. Developing your own coping strategies doesn’t have to be complicated. You can simplify the process by focusing on these three steps:
 

1. Identify: Make a list of tasks that have become more challenging.
   Focus on developing coping strategies for your more challenging tasks. For example, if you are forgetting to take your medications, but have no problem remembering to do the laundry, focus on creating medication reminder strategies first.
2. Prioritize: Determine if the task is necessary.
   Ask yourself if the task you are trying to accomplish will help you get to your goal. For example, if paying bills has become more difficult for you, can someone help you write out each check? If the answer is yes, consider asking someone to help. You can remain in charge of signing each check.
3. Strategize: Find the solution that works best for you.
   For example, if you are having difficulty cooking dinner, try simplifying the process by using a crockpot. You can make a full meal without spending a lot of time figuring out the cooking process.

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When is it Time to Place a Loved One with Dementia?

 One of the most frequent questions we get on Memory People is, "How do I know when it's time to place my loved one?" This, of course, is different for every patient, but it is also different for every caregiver. My rule of thumb is, and always has been, that there is no downside to placing a loved one in a facility too soon.

There are many drawbacks to waiting too long, and none of them are good. The number of things that can potentially go wrong in waiting too long to place a loved one are endless. Here are a few examples:

Medications In a facility, the medications are regulated and can be changed, usually within the hour for whatever reason. When your loved one is living at home, try getting them to the doctor for an evaluation to change their meds. This in itself can be a disaster, and is unnecessary once you have placed them.

Mobility Toward the end stages of dementia and Alzheimer's, patients have extremely limited mobility. Take a 70 year old spouse, weighing in at about 90 lbs. soaking wet, trying to get her 180-pound husband to the bathroom two or three times each night. All this does is put both of them in danger of falling. The end result could be a broken hip which, in some elderly people, is in itself a death sentence. Bathing, toileting, dressing, and other activities of daily living all come with risks, but a facility is better equipped to safely handle all of these. Then there's the fear of them getting out of the house without you knowing. Wandering can (and does) happen in a facility, but the chances of your loved one wandering there are a lot slimmer. The response time when someone does wander is greatly increased as well, due to the number of employees available to look for them.

Stress Anyone who cares for a loved one knows what I am talking about here. It doesn't matter if you are in your thirties or in your seventies, the stress that dementia puts on a caregiver is the same. If you are in your thirties, chances are you’re in reasonably good health. If you are in your seventies, you are more likely to have several medical conditions of your own to contend with. Stress can quickly manifest itself in people of any age, and is known to exacerbate even minor ailments. Sometimes placement in a facility is best for both the caregiver and the loved one’s overall health and wellbeing.


Long-distance caregiving This rarely works. How could it? Some dementia patients have the help of local family members, but they still struggle to stay on top of the care and assistance that their loved ones require. Some try to do this from hundreds or thousands of miles away, but adequate supervision and care can't be provided from afar. If you are a caregiver who is doing this, you know what I am talking about.

Have a plan The most important reason to have a plan way before it comes time to even think about placement is because you said you would. What does that mean, "You said you would"? It means that somewhere along the line you probably promised to take care of your parents, your spouse, your siblings, whomever. You may have said that you would never place them in a nursing home for any reason. Well, never sometimes arrives before we know it. I am telling you this as a patient who knows his destiny. I know what is coming. In a year or two, I may not understand. But right now I do, and I do not want to put my wife or our daughter through that. Period. Then there’s the fact that, as a patient, I deserve and demand to be taken care of to the best of one’s ability. My daily care should not be substandard simply because of a promise you made some 20 or 30 years ago. Chances are, we all have made promises we haven't kept for one reason or another. This thing about, "I promised my Mom I would never put her in a facility," is noble, but that’s about it. Dignity also plays a huge role in this. We all want to be cared for with dignity. A patient may not be able to communicate or have any idea what is going on around them, but they deserve to have their dignity remain intact. It tends to be a matter of pride for their caregivers as well, believe it or not. One doesn't want their family to know they can no longer take care of their Dad, so they do the best they can, not even realizing that the care they are trying to provide is substandard at best. Every patient deserves to be taken care of. That should never even be up for debate, but it often is. In closing, I want to tell you something, and you need to think about this. Placing your loved one in a facility needn't be the dramatizing thing it is portrayed to be. The nursing homes these days are nothing like they were 30 years ago when you made that promise to never place them. Chances are neither the patient nor the caregiver have ever been in a facility that cares for dementia patients. Why is that? Because no one has a plan. Some think that one day they will decide they can no longer handle being a caregiver, just drive up to a facility with their loved one in the back seat, and tell the nurse at the desk you have arrived and you can't do this anymore. This only happens in movies. The only person who can place your loved one is their doctor. You, as their caregiver, can and should acknowledge when you can no longer handle these responsibilities, but it is only by doctor’s orders that a patient can be placed in facility. It is imperative to have some sort of long-term care insurance in place, which has to be purchased before your loved one was even diagnosed way back when. But this rarely happens. So you have to depend on what money your parents have, and it’s likely you have no idea where or how much that is. Another issue is whether the facility you are looking at has room for your loved one. Again, you can't just drive up and expect the facility of your choice to have a vacant room waiting for you. This post could be twice as long, and I still would have just grazed the surface on why you need to have a plan when it comes to placement. Do yourself and your loved one a favor and be prepared. To me, placing a loved one is one of the most loving things you will ever do for them. You are doing something your heart tells you not to, but you are doing something that your mind knows is the right thing to do. This is exactly what you said you would do all those years ago: take care of them. When you can no longer manage, you seek out placement. This is, in fact, taking care of them.

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Memory Care Tricks from an Unlikely Literary Source

I just finished reading "And The Mountains Echoed," by Khaled Hosseini.

 

 

It is a wonderful book, a little confusing as it jumps back and forth between various eras, and has two characters with the same name. But the end of the book, and the life of the character that begins the story, tells of his drop into the foggy realm of Alzheimer's.

 

 

While his daughter is caring for him at home, she defuses his out of control rants by quickly giving him a catalog to distract him from whatever has upset him. Another trick she used was to turn the TV to the Weather Channel, boring him enough to put him asleep.

Great ideas – I hadn't thought of them.

 

When he finally ends up in a memory care facility, the author tells of them using a "fidget apron" on him. The apron has strings he can tie or twist, and buttons that he can work with, helping to relieve agitation.

 

 

Those things made me begin to wonder what other tricks memory care units use to calm and occupy patients that we caregivers could adapt for home use.

 

 

Of course, the book itself is fiction, but I am sure the ideas came from real life experiences. So I began digging for information. Thanks to the Internet, answers were just a click away:

• One suggestion was to use "tool boxes" to jog the patient's memory and even start a dialogue about their recollections using certain items such as kitchen utensils, sewing supplies, tools and cleaning implements.
• Small area maps, found in drug stores or restaurants, can be used to help patients find their place in the community.
• Reduce stress and create a calm environment by playing music the patient may recall from his or her youth or church memories. Just last week, Charlie asked me to order a set of CD's with music from the 1950's that were advertised on TV. Hearing the music began to stir memories from his past and he wanted to make them a part of his present. Also, whenever he hears music from the Viet Nam era he begins talking about his service there in the late ‘60s.
• Patients in the later stages of memory loss may find it soothing to hold a doll or stuffed animal. A stuffed dog or cat, for instance, may even become a satisfactory replacement for a pet left behind when the patient entered long-term care.

Dementia, distant memories and simple chores Charlie's daughter made him two beautiful scrapbooks: one with photos and memorabilia of family, the other, a book of his military experiences. He enjoys sitting and reminiscing about events that are triggered by the photos and news articles.   Like most patients with dementia, he has far better recall of things from the distant past than what transpired yesterday.   I had a neighbor whose claim to fame was her spotless house. This didn't change when she fell into the dementia pit.   Day after day she wandered the house cleaning the same drawer(s) that she had cleaned yesterday. At first, her husband told her to stop, reminding her that she did that yesterday. But, he finally learned that to her, she was "spring cleaning" each and every day, and was proud of the work she was doing. Giving the patient simple chores to do will give them a sense of usefulness. Just be careful not to criticize if the chore isn't done up to your high standards.   Charlie loves to feed the birds. I buy a loaf of bread each week, just so he'll have something to feed the crows. He waits by the window for them to come from the perch, high above the house, where they await his daily bounty. I'm sure they wouldn't starve without his help, but he feels like he has done something important. And he has – for himself as well as the birds.   If you are a reader, borrow the Hosseini book from the library and do something to relieve your own stress.

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How to Travel With A Loved One Who Has Dementia

 

Guest article by Derek Hobson-Nahigyan

Surprisingly, most family caregivers decide not to travel with loved ones living with dementia. They figure, if the family wants to be together, then they’ll have to visit. Bringing the family to you is a reasonable option, but you shouldn’t fear traveling; especially, given the technological advances to make life easier.


What is the best way to travel?

In general, if you talk with caregivers about their experience traveling with an elder living dementia, they’ll tell you the best way is the most direct–by car or plane. Taking the train or bus, while potentially more cost-effective, can be more stressful. Numerous stops, combined with disorienting symptoms of dementia, may result in one getting lost just trying to use a restroom.


When you’re driving, you can better control the environment and help your loved one if s/he experiences sundowning or mood swings.


Airport staff is equipped to help you assist your loved one through the confusing maze of air travel, today. Be sure to request assistance when you book your flight. Even though your loved one may not require a wheel chair, this will expedite processing through the terminal and security until you reach the departure gate and then to the baggage claim area.


What is the best place to travel?

The best places one with dementia may enjoy are those that are familiar–whether old neighborhoods and family homes or places visited from years ago and still fondly recalled.


Familiar places also have the advantage that if your loved one should become lost, you have a better chance to locate him/her. And if you still know people there, you can involve them via social media, such as Twitter and Facebook. Not long ago, a senior was missing in Issaquah, Washington, when the family posted a notice on Facebook. Less than a day later, he was found. Although, social media can facilitate locating a lost loved one in an unfamiliar place, it’s easier when the place is familiar.


If you are traveling to an unfamiliar place, bring keepsakes that trigger positive reactions in order to comfort your loved one in case, s/he becomes agitated and upset.


Which technological advances can help locate elder loved ones?

There are devices to help find elders with dementia who wander. The Alzheimer’s Association’s MedicAlert and Safe Return offers two products to help locate wandering loved ones with a tracking system. In addition, more companies are targeting the elderly demographic with innovative apps/products to help monitor their whereabouts. Some of these devices are easily affordable while others cost more money. It’s best to weigh your options between peace of mind verses cost.

 

Travel with your elderly loved ones living with dementia is possible if you weigh three items–mode of travel, location, and technological advancements.




Derek Hobson, BA is the editor for Concierge Care Advisors, a senior care referral agency. He developed a passion for elder care when he became the primary caregiver for his grandmother living with dementia. Since then, he has sought to inspire fellow caregivers. “There is no success without hardship.”

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