10.18.17 Some Things I Learned About Dementia reposted from December 2014 with updated information

October 18, 2017 – When I first learned about Christine Bryden I wrote the blog post below. In the video below she’s talking about nursing/ memory care and what someone with dementia needs vs. what they sometime receive.  Personally, like Christine, I want to have a say in where I may live at the end of my life.  Roy and I have talked and I’ve chosen two nursing homes (one in Hammond and one in Amite) that we want to check out.  My desire is to take care of as much as I can now when I am in a good place before I can’t do it any longer.

Christine Bryden: I have Mid-stage Dementia. Here’s What I truly Need.

t081026-Through-W3648The video below is exceptional. I can share what we experienced caring for my mom, but Christine Bryden has this disease and is doing everyone a service by sharing what she’s learned and experienced.

Christine Bryden was diagnosed with dementia at the age of 46. At the time, she was a single mother with 3 girls, as well as a senior executive to the Australian Prime Minister. Six years into her dementia, see her talk about what it feels like and what you can do to help.

She is amazing at how well she’d done in writing books, giving lectures like the video.  Reports say that after 20 years of having dementia that she is still alive.  That is such an inspiration to me.

She, so very well, explains what Alzheimer’s patients truly need. The video is almost 30 minutes long but I encourage everyone to watch it. Caregivers, family members and friends can learn so much from this. Her advice is exceptional, especially since she’s actually living the life of Dementia.

I have not read her book Dancing with Dementia so I can’t recommend it. However, if you want to check it out, here’s a link to where you can purchase it from Amazon for $18.32 at:

Click on the photo below to watch the video.

christine bryden

I first saw this on Alzheimer’s and Dementia Weekly, a great resource. I will share some of their articles here but they have so much more than I can pass along so I encourage you to check it out! You can subscribe to receive weekly emails loaded with information. Their website is:

http://www.alzheimersweekly.com/

indexAn informational document called “The 10 Rights of People with Dementia” seems to go well with the video above.

 The 10 points of the global dementia charter are: 1. I should have access to a doctor to check if I have dementia.

2. I should have access to information about dementia so I know how it will affect me.

3. I should be helped to live independently for as long as I can.

4. I should have a say in the care and support that I am given.

5. I should have access to high-quality care that’s right for me.

6. I should be treated as an individual, with those looking after me knowing about my life.

7. I should be respected for who I am.

8. I should have access to medicine and treatment that helps me.

9. My end of life wishes should be discussed with me while I can still make decisions.

10. I want my family and friends to have fond memories of me.

index Romans 8:37-39: “No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.”

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Until next time, my friends:BE LOVING

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10.16.17 Some Things I Learned About Dementia reposted from December 2014 with updated information

October 16, 2017 – Like I said below in the original post, this is one thing I was clueless about when taking care of mama. How I wish had know this then.

I have had poor vision all my life, until I had cataract surgery which included a fresh new lens in both eyes. I also have a macular hole in my left eye. My overall vision has deteriorated to where I cannot read street and highway signs. This use to be just some of the time, but now it’s pretty much all the time.

Through out my life, one of my favorite things to do is to read books. Not only am I having trouble comprehending what I read, it’s getting harder to see the words. I have a Kindle, which helps because I can enlarge the font!

I have learned that reading a story that has multiple books in it where most of the characters remain in the story from book to book is the best way for me to read now. Because the characters are described in the first book, if I can understand and get a good feel of them in the first book I don’t have to go through that in the subsequent books.

I’ve always loved science fiction, mysteries, biographies, and very deep thinking books. I’ve tried to read them recently and have to stop after a few pages because nothing is clicking and I just get confused. BookBub is a website that sends me daily offers for cheap and FREE books. I mostly choose the free books that sound interesting. I am thankful for BookBub because if I get a book and can’t read it that’s okay, it was free! I do keep trying to read the types I’ve always loved because some times are better than others with my brain.

I find I do well when reading simple, kinda funny, Christian, romantic stories set in modern times and are preferably in a series. If you know of books that fit in those categories let me know! I realize I shifted from seeing to understanding but they both relate to reading so I hope it makes sense to you all!

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This is the original blog post

Two things I’d like to share today are:

  • Alzheimer’s drastically changes vision
  • Creating a dementia friendly home

Once you see how their vision is affected in the first part, you’ll want to do whatever you can to make your house a dementia friendly home.

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distorted vision

I had no idea that Alzheimer’s disease changes how you actually see things. This is one of the things we did not know about when Mama was with us. And one of the things I really wish I had.

If you don’t share anything else with others, please pass along this video to all your friends on facebook or through email. It makes perfect sense out of a lot of odd behaviors and odd things they say, but people have to know it.

Dementia affects many parts of of the body as it progresses. Sometimes, it can be difficult to understand the changes your loved one is going through. In this video, a care-giver explains the visual changes that occur during dementia. Click on the picture below to view the video.

changes in vision

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CREATING AN ALZHEIMER’S FRIENDLY HOME

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It is important that people living with dementia have the best quality of life possible in their homes. Inexpensive and simple changes to a house can make it so much more dementia-friendly. See simple changes that create a more dementia-friendly environment, enhancing emotional well-being and independence.

This video has good ideas from the Social Care Institute for Excellence. Amazon carries most of the items you’ll see in the video. Click on the picture below to view the video.

dementia friendly home

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Please come back next time when I’ll share another important aspect of caring for someone with Alzheimer’s. If you want to get an email whenever I post a blog (I write about other things, not just Alzheimer’s) find the “FOLLOW” box which is usually to the right hand side somewhere, enter your email and respond when the confirmation email is sent to you.

If you are in need of prayer for yourself, in your role as a caregiver, or if you have any specific questions please send me a comment with whatever information you want to share or ask about. I’ll say again that I’m not an expert but I probably experienced with my mom a lot of things you’re going through and will try my best to help. If I don’t know the answer I will tell you I don’t know. I’ll never judge, I’ve been judged enough to last a life time and would never do that to someone else. My email address is rosalyn@selu.edu if that is an easier way to communicate.

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2 Corinthians 1:3-4: “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.”

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10.15.17 Some Things I Learned About Dementia reposted from November 2014 with updated information

October 15, 2017 – This one is very basic information about Alzheimer’s. I do not have Alzheimer’s, I have Vascular Dementia and Frontotemperal Dementia. Since I want ya’ll to know as much as you can about what you might see happening here’s what I found on the progression of both.

From the Alzheimer’s website about Vascular Dementia this is what they say about its progression:

Vascular dementia develops when brain cells are deprived of oxygen and die. This happens either because of diseases of the very small blood vessels deep in the brain (known as subcortical vascular dementia), or after a major stroke or a series of smaller strokes (both known as stroke-related dementia). The series of smaller strokes is what I’ve had.

It is sometimes difficult to tell whether a person has Alzheimer’s disease or vascular dementia. It is also not unusual to have a mixed form of dementia, meaning the person has both vascular dementia and Alzheimer’s disease together.

Subcortical and stroke-related vascular dementia share some symptoms but have others that differ. They also tend to progress in different ways. Subcortical vascular dementia usually develops gradually and progresses slowly, like Alzheimer’s disease. In contrast, when vascular dementia follows a large stroke, symptoms usually develop suddenly. Stroke-related dementia often then follows a ‘stepped’ progression, with long periods when symptoms remain the same and short periods when they suddenly worsen (this pattern is seen because each stroke further damages the brain).

The symptoms of vascular dementia are overall broadly similar to those of Alzheimer’s disease – and become more similar as the dementia progresses – but with some important differences. The main early symptoms of vascular dementia are often not forgetfulness but rather:

  • difficulties with planning or organizing, following steps (eg cooking a meal) or making decisions
  • slower speed of thought
  • problems concentrating, including short periods of confusion.

You can help someone with vascular dementia by breaking tasks down into smaller steps and giving them plenty of time to think and speak.

A person with early stage vascular dementia is prone to apathy, mood swings and being unusually emotional. They are also particularly likely to have anxiety and depression, partly because they are more aware of the problems their dementia is causing.

Vascular dementia after a major stroke is often accompanied by physical symptoms, such as weakness of a limb, or problems with vision or speech. These early symptoms arise when the stroke has damaged a particular part of the brain. With rehabilitation the symptoms might get a little better or stabilise for a time.

As vascular dementia progresses, the symptoms become closer to those of middle and eventually later stage Alzheimer’s disease. Problems with memory loss, confusion, disorientation, reasoning and communication all become worse. The behavioral changes seen as vascular dementia progresses, such as irritability and agitation, are also similar to those of Alzheimer’s disease. Delusions, and less often hallucinations, are also seen. The late stage of vascular dementia is largely as described above for Alzheimer’s disease.

Each person will experience dementia differently. On average, people with vascular dementia live for around five years after symptoms begin, less than the average for Alzheimer’s disease. In many cases, the person’s death will be caused by a stroke or heart attack. For more information about Vascular Dementia, see our page on vascular dementia.

Symptoms of Frontotemporal Dementia

Each case of FTD is different, but the illness generally becomes more distinguishable from other brain conditions as it progresses. Symptoms may occur in clusters, and some may be more prevalent in early or later stages. Here is a list of ten signs of FTD:

  1. Poor judgment
  2. Loss of empathy
  3. Socially inappropriate behavior
  4. Lack of inhibition
  5. Repetitive compulsive behavior
  6. Inability to concentrate or plan
  7. Frequent, abrupt mood changes
  8. Speech difficulties
  9. Problems with balance or movement
  10. Memory loss

From the Alzheimer’s website about progression of Frontotemporal Dementia (including Pick’s disease)

This type of dementia is caused by damage to the frontal and/or temporal lobes at the front and sides of the brain by the ears. My frontal and temporal lobes have significantly shrunk (they call it atrophy). These are the areas responsible for our behavior, our emotional responses and our language skills. There are three different types of frontotemporal dementia – one type that affects behaviour first, and two that affect language first.

During the early stages of frontotemporal dementia, memory of recent events may be unaffected. However, there will be other changes.

A person with behavioural variant frontotemporal dementia may appear uncharacteristically selfish and unfeeling. They may behave rudely, or may seem more easily distracted. Other early symptoms may include loss of inhibition, ritualised behaviour (eg tapping or repeatedly walking the same route) or compulsions and a liking for sweet foods. It is much more likely for those around the person to be aware of these changes than the person is themselves.

In a small number of people with frontotemporal dementia, the first symptoms are problems with recalling the names of objects and understanding words (semantic dementia) or with producing fluent speech (progressive non-fluent aphasia).

As frontotemporal dementia progresses, differences between these types lessen: people with the behavioural variant develop language problems and those with language problems develop behaviour changes. In the later stages, the symptoms of frontotemporal dementia become more similar to those of Alzheimer’s disease. There are some differences – for example, day-to-day memory loss and problems judging distance or seeing objects in three dimensions develop later in frontotemporal dementia, whereas changes in behaviour, such as agitation or aggression, develop earlier. Supporting a person with frontotemporal dementia can be a challenge as they may be younger and will have changes in behaviour and communication.

Each person’s experience of frontotemporal dementia will be different, but on average people live for six to eight years after symptoms begin. For more information on Frontotemporal Dementia, see our page on frontotemporal dementia.

This is the original blog from November 2014:

Thanks for coming back! We’re now settled in our new blog home. Please consider “following” this blog by clicking on the “Follow” button on the right hand side of the page.

Two things I’d like to share today are information from the alz.org site.

  • 10 Early Signs of Alzheimer’s
  • 7 Stages of Alzheimer’s.

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know the 10 signs
Could you spot the early signs of Alzheimer’s before the disease became severe? Often, Alzheimer’s symptoms are overlooked or misdiagnosed as other illnesses. Many times it is easily written off as being forgetful, or misdiagnosed as depression. The info graphic below (from dailyinfographic.com) lays out 10 early symptoms found in Alzheimer’s. While the disease will ultimately progress over time, early detection will delay the process. That means early diagnosis and early treatment will keep you or your loved ones with you that much longer.

There is also a comparison shown below between what is “typical” in an elderly person without Alzheimer’s compared to the actual Alzheimer’s warning signs.

alzheimers-640x2284

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7 stages

It became obvious to my sister and I that Mama had Alzheimer’s when she was around the 4th to 5th stage. We realized soon that she had been going through the first four stages for maybe a couple of years without us realizing it. After that it was a little over a year that she went from stage 4/5 to stage 7. I haven’t started putting empty boxes of food back in the freezer like she did, which is what first alerted us to a problem. I have done smaller things that makes Roy shake his head because he knows they are not normal.

Below are three different ways to learn about the 7 stages of Alzheimer’s. First is a written explanation, second is a link to an Interactive tour of the brain showing the progression, and third is a graceful, poignant dance representation of the stages. I recommend watching all three. This is important information and it will stick with you better if you do.

Not everyone will experience the same symptoms or progress at the same rate. This seven-stage framework is based on a system developed by Barry Reisberg, M.D., clinical director of the New York University School of Medicine’s Silberstein Aging and Dementia Research Center.

curley dividersAlzheimer’s symptoms vary. The stages below provide a general idea of how abilities change during the course of the disease.

Stage 1: No impairment
Stage 2: Very mild decline
Stage 3: Mild decline
Stage 4: Moderate decline The stage I am in is between Stage 4 and Stage 5
Stage 5: Moderately severe decline
Stage 6: Severe decline
Stage 7: Very severe decline

STAGE 1: No impairment (normal function)
The person does not experience any memory problems. An interview with a medical professional does not show any evidence of symptoms of dementia.

STAGE 2: Very mild cognitive decline (may be normal age-related changes or earliest signs of Alzheimer’s disease)
The person may feel as if he or she is having memory lapses — forgetting familiar words or the location of everyday objects. But no symptoms of dementia can be detected during a medical examination or by friends, family or co-workers.

STAGE 3: Mild cognitive decline (early-stage Alzheimer’s can be diagnosed in some, but not all, individuals with these symptoms)
Friends, family or co-workers begin to notice difficulties. During a detailed medical interview,doctorsmay be able to detect problems in memory or concentration. Common stage 3 difficulties include:

  • Noticeable problems coming up with the right word or name
  • Trouble remembering names when introduced to new people
  • Having noticeably greater difficulty performing tasks in social or work settings
  • Forgetting material that one has just read
  • Losing or misplacing a valuable object
  • Increasing trouble with planning or organizing

STAGE 4: Moderate cognitive decline (Mild or early-stage Alzheimer’s disease)
At this point,acarefulmedicalinterviewshould be able to detect clear-cut symptoms in several areas:

  • Forgetfulness of recent events
  • Impaired ability to perform challenging mental arithmetic — for example, counting backward from 100 by 7s
  • Greater difficulty performing complex tasks, such as planning dinner for guests, paying bills or managing finances
  • Forgetfulness about one’s own personal history
  • Becoming moody or withdrawn, especially in socially or mentally challenging situations

STAGE 5: Moderately severe cognitive decline (Moderate or mid-stage Alzheimer’s disease)
Gaps in memory and thinking are noticeable,and individuals begin to need help with day-to-day activities. At this stage, those with Alzheimer’s may:

  • Be unable to recall their own address or telephone number or the high school or college from which they graduated
  • Become confused about where they are or what day it is
  • Have trouble with less challenging mental arithmetic; such as counting backward from 40 by subtracting 4s or from 20 by 2s
  • Need help choosing proper clothing for the season or the occasion
  • Still remember significant details about themselves and their family
  • Still require no assistance with eating or using the toilet

STAGE 6: Severe cognitive decline (Moderately severe or mid-stage Alzheimer’s disease)
Memory continues to worsen, personality changes may take place and individuals need extensive help with daily activities. At this stage, individuals may:

  • Lose awareness of recent experiences as well as of their surroundings
  • Remember their own name but have difficulty with their personal history
  • Distinguish familiar and unfamiliar faces but have trouble remembering the name of a spouse or caregiver
  • Need help dressing properly and may, without supervision, make mistakes such as putting pajamas over daytime clothes or shoes on the wrong feet
  • Experience major changes in sleep patterns — sleeping during the day and becoming restless at night
  • Need help handling details of toileting (for example, flushing the toilet, wiping or disposing of tissue properly)
  • Have increasingly frequent trouble controlling their bladder or bowels
  • Experience major personality and behavioral changes, including suspiciousness and delusions (such as believing that their caregiver is an impostor)or compulsive, repetitive behavior like hand-wringing or tissue shredding
  • Tend to wander or become lost

STAGE 7: Very severe cognitive decline (Severe or late-stage Alzheimer’s disease)

In the final stage of this disease, individuals lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement. They may still say words or phrases.

At this stage, individuals need help with much of their daily personal care, including eating or using the toilet. They may also lose the ability to smile, to sit without support and to hold their heads up. Reflexes become abnormal. Muscles grow rigid. Swallowing impaired.curley dividersTo learn more about the brain and specifically how Alzheimer’s changes it, CLICK HERE to go to Alz.org. If you find the brain steps 1-7 to be uninteresting, skip to step 8 where they start with the Alzheimer’s brain.

curley dividersSome of us learn things in different ways than others. I do better sometimes when I visually learn from seeing in action, rather than reading. I found this video which uses dance as a unique way of explaining the various stages.

As the three girls dance, the narrator explains the different stages of Alzheimer’s. Then, the purple dancer’s movements slowly begins to differ from the others, correlating to the mental and physical changes that mark each stage of the disease. Take a look.

A DANCE THROUGH TIME

dance you tube 7 stages autum branch with falling leaves divider

Please come back next time when I’ll share how Alzheimer’s drastically changes vision and about making a dementia friendly home. If you want to get an email whenever I post a blog (I write about other things, not just Alzheimer’s) find the “FOLLOW” box which is usually to the right hand side somewhere, enter your email and respond when the confirmation email is sent to you.

If you are in need of prayer for yourself, in your role as a caregiver, or if you have any specific questions please send me a comment with whatever information you want to share or ask about. I’ll say again that I’m not expert but I probably experienced with my mom a lot of things you’re going through and will try my best to help. If I don’t know the answer I will tell you I don’t know. I’ll never judge, I’ve been judged enough to last a life time and would never do that to someone else. My email address is rosalyn@selu.edu if that is an easier way to communicate.

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Philippians 4:6: “Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done”.

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10.14.17 Some Things I Learned About Dementia reposted from November 2014 with updated information

October 14, 2017 – Like I say in the original blog from November 2014, the biggest thing I want to share with caregivers or people who know someone with Dementia is D O N O T C O R R E C T T H E M.

Right now, I don’t mind it too much if you help me remember things I seem to have forgotten or get wrong. As time progresses in my dementia journey there will come a time when I want you to really pay attention to this blog post’s information. For now, just don’t make me feel foolish because I don’t remember. Even now, sometimes as soon as you or I say something, a lot of times I don’t remember what you or I just said. So, you correcting me about something I just said (that I don’t remember), makes me even more confused.

It hurts the feelings of a dementia patient when you make them feel foolish, or correct them like they should know better. I know my poor mama did not know better as time went on and it seems I won’t either. Getting into their “special little world” will come later in this blog series.

Here’s the original 10.14.14 blog post:ALZ BLOG LOGOjpg

Thanks for coming back. I feel like Alzheimer’s caregivers and loved ones are connected with each other like a family because no one else really understands what it’s like. Reach out to others that you may know in this family of ours to ask questions and learn what to expect as time goes on. A dear senior gentleman at our church allowed my sister and I to visit him and his wife (who had Alzheimer’s and was just a few days from her death) and ask our questions. It is a very shocking thing to see someone with this disease near the end of their life. I truly believe we were better prepared to handle the end of our mother’s life because he allowed us to come talk and see his wife. We all need each other so if your loved one is near the end and you know of a caregiver near the beginning of the process. please open your heart and home to them so they can learn from you and be better prepared.

One of the important reasons for as many people as possible to be more aware of Alzheimer’s, is that:

By 2050, the number of people age 65 and older with Alzheimer’s disease is estimated to triple, from 5 million to as many as 16 million, unless medical breakthroughs prevent, slow or stop the disease. Alzheimer’s is the sixth leading cause of death in the United States. One in three seniors die who have Alzheimer’s or another dementia. Those with Alzheimer’s live an average of eight years after their symptoms become noticeable to others, but survival can range from 4-20 years, depending on age and other health conditions. (source: empowher.com)

autum branch with falling leaves dividerIf you learn only one thing from this and future blogs about dementia, it is what I am going to talk about today.

  • Your loved one will begin to tell you stories over and over and over, etc. etc. etc.
  • They may ask the same question over and over and over even after you’ve answered them.
  • You will tell them something one minute and the next thing you know it. they ask you about what you just told them in a way that you know means they didn’t remember you just told them.
  • Your loved one will call common objects by incorrect names or will call you the name of her brother or her other child.

This list can go on and on.

WHAT I WANT YOU TO KNOW QUITE CLEARLY IS

D O N O T C O R R E C T T H E M

You may get aggravated by these actions of theirs but that is NOTHING compared to the hurt, depression, confusion and sadness you cause them by saying things like “I already told you that mama” or “How many times are you going to ask me that” or “Her name is not Susie it’s Donna, you know that daddy” or any other variation of correcting them.

Not correcting them is very difficult, especially early on when you don’t really know that the reason they are saying these things is something they can’t help. You don’t know they have dementia, you just think they’re forgetful and that you are helping them by reminding them what the correct thing is.

My strong recommendation is once something like that happens several times make every effort within your control to STOP CORRECTING THEM. One source I researched said to just smile and love them. They are not going to remember this information you just gave them very long but they will feel and maybe remember the hurt and sadness you caused. Don’t come back and tell them you are sorry, they won’t know what you are talking about and this will cause them more confusion.

Below is one of the most pleadingly direct, true poems from the perspective of a person with Alzheimer’s:

an alzheimers request by

That information is very basic. and I hope. to the point. A lot more information can be found on the internet. A look at communicating with your loved one that goes way beyond the scope of my simple “DO NOT CORRECT THEM” was found on the Lewy Body Dementia Association, Inc. (Lewy Body is a form of dementia) website and I’ve included it below.

autum branch with falling leaves dividerCOMMUNICATING EFFECTIVELY WITH THE PERSON WHO HAS DEMENTIA

As a person’s condition progresses, his or her ability to communicate diminishes. Understanding the effects of the disease will help you communicate as effectively as possible for as long as possible

Your loved one may:

  • Be unable to remember names, thoughts or memories
  • Use the wrong words or invent words
  • Mispronounce or repeat words
  • Have difficulty organizing thoughts
  • May be easily distracted
  • Use more nonverbal gesture
  • Lose ability to reason and understand
  • Use language that is more direct or accusatory
  • May become withdrawn and speak very little

Medications and other health problems also may affect communication. If you notice significant or abrupt changes in your loved one’s ability to communicate, talk to his or her physician.

Tips for better communication Although you may find these changes frustrating and even alarming, you can counter them. Consider using these tips to improve communication with your loved one:

  • Make the effort. When communicating becomes difficult, your first response may be to stop. Recognize that communicating effectively may take more time and energy. Making the effort will help you sustain this vital aspect of your relationship with your loved one as well as preserve your loved one’s dignity.
  • Try to understand. Rather than correcting mispronunciations or inaccurate statements, recognize that your loved one may no longer be able to consistently come up with the right words, or may have trouble comprehending what you’re saying. Be patient and use phrases such as “I’m sorry, could you repeat that?” or keep the flow of conversation going by providing the elusive word.
  • Speak slowly, calmly and quietly. This will allow the person time to process what you are saying. People with dementia often watch our non-verbal cues (facial expression, body language, tone of voice) to interpret what we are saying and may mirror our mood.
  • Avoid quizzing, testing or trying to teach the person to remember. These techniques won’t work and will only serve to embarrass and humiliate. Imagine the feelings associated with not being able to recall a child’s name during such a test. Instead of saying, “Do you know who this is?”, try “Here is your granddaughter Susan who has come to visit.”
  • Reassure and comfort. Do not reality orient. The person may be worried about the children, parents, going “home” even if living at home or going to work even if long retired. Trying to convince them of the truth is generally fruitless and can be frustrating or even frightening. Jump into their world and help to make it less frightening by providing lots of reassurance. For example, if your loved one is worried because the children are not home from school yet, provide an explanation that might be acceptable and reassuring such as, “the children are staying at a friends house tonight, they are having a nice time”. If your loved one does not recognize you, go along with it or try stepping out of the room and announce your identity upon your return.
  • Be aware of your nonverbal communication. Speak slowly, calmly and in a normal volume. People with dementia can be sensitive to changes in mood, voice, posture or facial expression. You can do wonders to ease tension by smiling at a frustrating moment. If you have difficulty understanding what your loved one is saying, listen for the feelings behind what he or she is trying to communicate and validate those feelings. For example, say, “I know that you’re frustrated right now” or “I’m glad you’re so happy today.”
  • Forgive yourself when you don’t always respond appropriately. You may find it difficult to communicate with as much understanding and patience as you’d like to. Keep in mind that because of the memory loss, your loved one is unlikely to remember everything you say.
  • Simplify your communication. Stand directly in front of your loved one and make eye contact. Communicate one idea at a time and use simple instructions. Try breaking even simple tasks into one-step commands. If you’re helping with a task, let your loved one know what you’re going to do next. If possible, demonstrate what you want your loved one to do — such as brushing teeth or putting on a jacket. If you must repeat things, try to use the same words. If your loved one doesn’t understand a second time, then try rewording. Avoid abstract concepts, which your loved one may find difficult to grasp. For example, phrases such as “jump into bed” can be confusing. Instead, use direct statements such as “it’s time to get into bed.”
  • Validate the feeling behind the words. Even if you are unable to understand what is being communicated, look at the non-verbal signs of emotion. Is she upset? Joyful? Afraid? Respond accordingly providing lots of affection and comfort.
  • Reminiscence can be very useful and validating. Persons with dementia usually retain their memories from long ago. Discussing these memories and prior accomplishments often provide a sense of security.
  • Do not try to argue or reason with the person. Their ability to reason is no longer there, and the person will not be able to remember your reasoning or rationally weigh your points. Do not argue with the person over what they see, hear or feel. If the person is seeing things you don’t see, reassure him and respond to his or her feelings about it. Remember that these ideas or hallucinations are very real to the person who is experiencing them. Rather, offer reassurance and validation (e.g., “I know this is troubling for you, let me see if I can help”).
  • Reduce clutter, extraneous noises or confusing aspects in the environment. Check out any real basis to the person’s fear. For example, the person may “hear people” in the next room because the TV is on.
  • If the person misplaced something and thinks you or someone else “stole it,” offer to help look for the item. Keep track of frequent hiding places, and if possible keep duplicates of the item.
  • Accept changes. Keep in mind that the changes you see and hear in your loved one are a result of the disease, not of your loved one trying to be difficult or hurtful. When your loved one says inappropriate things, remember it’s the disease talking. Try not to take it personally.

Even when your loved one no longer responds in the way he or she once did, your efforts to communicate will help to keep him or her engaged in life for as long as possible.

autum branch with falling leaves dividerLAST NOTE FROM ME: This is related to the orange colored sentences underlined above. Remember that they are not going to come back into your world, the real world, so learn early on to live with them in whatever little bizarre world their deteriorating brain is creating for them. Even though they may have periodic lucid moments or even hours they eventually go back to their little bizarre world so when they do, go with them. Living in their world (when you are with them) is the kindest, more loving thing you can do for them and it will eliminate a lot of frustration on your part.

Please come back next time when I’ll share the a video I recently saw for the first time about how their vision changes as the disease progresses. It’s one of the things I truly wish I had known when mama was suffering with Alzheimer’s. I’ll also share with you the seven stages of Alzheimer’s and a video I found that depicts the stages using dance.

Please let me know if you are in need of prayer for yourself in your role as a caregiver or if you have any specific questions. Send me a comment with whatever information you want to share or ask about. I’ll say again that I’m not an expert, but I probably experienced with my mom a lot of things you’re going through and will try my best to help. If I don’t know the answer I won’t improve but will tell you I don’t know. I’ll never judge, I’ve been judged enough to last a life time and would never do that to someone else. My email address is rosalyn@selu.edu if that is an easier way to communicate.

autum branch with falling leaves dividerIsaiah 41:10: “Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand” (NLT).

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10.13.17 Some Things I Learned About Dementia reposted from November 2014 with updated information

October 13, 2017 – My interest in Dementia has changed over time since I originally published the information that begins below. My own dementia was not nearly as bad back then as it is now. I use to be able to talk to people and they could not tell that I had dementia. Now they can. I am reblogging these posts that were originally published on my dementia blog at rosalynsalzheimersblog.wordpress.com. I am reposting and republishing them on that blog and publishing them here as well.

I ask that our followers who personally know me and see me in person to read these carefully as a means for you to help Roy and I as we go down this Dementia Journey. I plan to add personal information when it applies to me here on this blog. I have an appointment with a new neurologist, Dr. Patricia Morgan on November 9th to review the past and get some fresh updated information on the condition of my brain now.

The three dementia medicines I’ve used over the last five years are now making me very dizzy and I’ve been taken off of them. I’ve tried a couple of times to get back on them but after several days of it absorbing in my system all three made me so dizzy its far worse than the benefit I was getting from having a clearer brain. I am not currently on anything and I won’t get back on anything until seeing the new neurologist.

Here’s the first blog post I wrote about Alzheimer’s Dementia around three years ago.

 

10367601_541945785942421_1370303081116848230_n Where do I start when sharing about Alzheimer’s? When I speak of Alzheimer’s here, it may also pertain to one of the other forms of dementia. Alzheimer’s is the most common form of dementia. Here is a link to the different forms of dementia so you can learn a bit more about them.

My mama, Josie Mae Cochran Blum Traylor died at age 87. On her death certificate a contributing cause of death was dementia. I plan to write more in future posts about her and our family’s experience as she suffered and died. I hope that what I will share will be helpful to those early on in this experience. I will share how life was for us while she lived with us and how I came to love that beautiful little Christian lady more every day until she left us on December 18, 2007.

I am by far NO expert on dementia. I can just share with you my own experience, and what I have learned online bringing it all into one place to help you. It’s important that you understand that if what I share about my experience is different than what your loved one’s doctor tells you: Listen to the Doctor.

My inspiration for writing this was all the things I learned AFTER my mother passed away that I deeply wish I knew when she was still with us enduring this horrible disease. When we first started noticing that something was not right, I searched for any information I could find, which back then wasn’t much. I found the most helpful information came from personal blog posts of real life experiences by caretakers of their family member or friend who had dementia.

I hope to become a resource like that to share what we learned during her life, and since then, about Alzheimer’s. I’ve invited friends and family to contribute since my experience is with my mother and others experiences were with their father, sister, brother, grandfather, grandmother, etc. We all experienced things from different perspectives.

While I’m writing this to help the caregiver understand more, you might not be the caregiver. Instead you’re a grandchild, child, other family member, friend or church family. 10689816_537425689727764_867424369629248004_nSome of what I have to share is for everyone who has anyone in their life with Alzheimer’s.

The individual who says “Why even go visit, they won’t know I was there as soon as I walk out the door”. I urge you to read and learn what you really CAN do.

I collected videos, stories, songs, graphics, blog posts and more that I will shared each week. These are not only about the person with Alzheimer’s but things that will help the caregiver survive the overwhelming struggles you will face. I’ve been the caregiver and learned a lot that helped me cope. I want to share that with you

These blog posts will come out weekly, probably on Fridays. The next post will have a general VERY IMPORTANT point I’d like to start with. It is the main thing that I’ve wanted to share for so long that may sound simple, but will make such a difference in a person life who is living with dementia. Someone, probably either God or my mama, have laid on my heart that others can be helped by the experience we had and I hope that turns out to be the case.

Please come back next time when I’ll share the number one thing you can do for your loved one from the very beginning of dementia. If you want to get an email whenever I post a blog (I write about other things, not just Alzheimer’s) find the “FOLLOW” box which is usually to the right hand side somewhere, enter your email and respond when the confirmation email is sent to you.

If you are in need of prayer for yourself, in your role as a caregiver, or if you have any specific questions please send me a comment with whatever information you want to share or ask about. I’ll say again that I’m not expert but I probably experienced with my mom a lot of things you’re going through and will try my best to help. If I don’t know the answer I will tell you I don’t know. I’ll never judge, I’ve been judged enough to last a life time and would never do that to someone else. My email address is rosalyn@selu.edu if that is an easier way to communicate.

I’ll close with a video I just found that gives a short summary of what Alzheimer’s disease is, how it progresses and why awareness is so important. The medical terms may go right over your head. Some went right over my head and I majored in Psychology. I think the video itself is extremely helpful in seeing how their brains are changing forever throughout this process.

tangle placque

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06.19.17 Some Things I Learned About Dementia – Two Great Videos

These two videos were found on Alzheimer’s and Dementia Weekly, a wonderful website with lots of information helpful to all. http://www.alzheimersweekly.com/

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SON, WHAT IS THAT?

This short film will move you in a wonderful way: a son, a father with dementia & love’s incredible power.

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WHILE HE STILL KNOWS WHO I AM, By Kenny Chesney

When my father was diagnosed with Alzheimer’s, I was determined he would not forget me … or I him. This is a grand tribute to all who are living with and dealing with Alzheimer’s disease.

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PERSONAL NOTE:  I am in a really good place right now, brain wise!   I’ve been taken off of several medicines including Aricept and Namenda (Dementia medicine) to see if that is the cause of some lightheadedness I’ve been experiencing.   So far the lightheadedness is significantly decreased, so now the goal is to determine which medicine was causing it.

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Please come back next time when I’ll share more topics about dementia from myself or from this source.  If you want to get an email whenever I post a blog (I write about other things, not just Alzheimer’s) find the “FOLLOW” box which is usually to the right hand side somewhere, enter your email and respond when the confirmation email is sent to you.

If you are in need of prayer for yourself, in your role as a caregiver, or if you have any specific questions please send me a comment with whatever information you want to share or ask about. I’ll say again that I’m not expert, but I probably experienced with my mom a lot of things you’re going through and will try my best to help. If I don’t know the answer I will tell you I don’t know. I’ll never judge, I’ve been judged enough to last a life time and would never do that to someone else. My email address is rosalyn@selu.edu if that is an easier way to communicate.

Until next time,

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05.12.17 Some Things I Learned About Dementia – 7 Ways to Respond to Mean Dementia Behavior

Another very helpful article from Daily Caring.  This article, http://dailycaring.com/7-ways-to-respond-to-mean-dementia-behavior/?FBAd199=Alz20170509Convert, and many more can be found on their website at http://www.dailycaring.com.  Be sure to click on the red links to take you to even more helpful information.

Seniors with dementia sometimes say hurtful things

When you’re caring for an older adult with Alzheimer’s or dementia, they might make mean comments, use hurtful words, or accuse you of terrible (and untrue) things. It’s devastating to hear!

The most important thing to remember is that the disease is causing the behavior. Your senior isn’t saying these things to purposely hurt you.

But trying to keep that in mind while they’re yelling isn’t helpful enough. We’ve got 7 effective tips to help you manage this difficult behavior and reduce the stress and resentment it causes.

Understand why someone with dementia is saying mean things

First, it’s important to understand why this hurtful behavior is happening. Mean comments or hurtful accusations could be triggered by something in their environment that causes discomfort, pain, fear, anxiety, helplessness, confusion, or frustration.

Dementia is a brain disease that causes parts of the brain to shrink and lose their function. Different parts control different functions like memory, personality, behavior, and speech. Dementia also damages the ability to control impulses, which means actions aren’t intentional.

Even though it’s difficult, do your best to remember that they truly don’t mean the mean things they say. This behavior often happens because they’re unable to express what’s actually bothering them. Accepting that they’re not doing this on purpose reduces your stress and makes the behavior easier to manage.

7 ways to manage mean dementia behavior

1. Calm the situation down
The first thing to do is bring the tension level down. You can do this by limiting the distractions in the room, like turning off the TV or asking others to leave.

If you stay calm, they’re more likely to calm down. It might help to count to 10 or even leave the room for a short time to cool down. Repeat to yourself “it’s the disease” as a reminder that they’re not intentionally doing this.

If the current activity seemed to cause the agitation, try shifting to a more pleasant, calming activity. Or, try soft music or a gentle massage.

2. Comfort and reassure while checking for causes of discomfort or fear
Take a deep breath, don’t argue, and use a calm, soothing voice to reassure and comfort your older adult. It also helps to speak slowly and use short, direct sentences.

Then, check for possible causes of agitation or fear, like:

  • Pain or discomfort
  • Signs of overstimulation
  • Feeling disturbed by strange surroundings
  • Being overwhelmed by complicated tasks
  • Frustration because of the inability to communicate

It also helps to focus on their emotions rather than their specific words or actions. Look for the feelings behind what they’re doing as a way to identify the cause.

3. Keep track of and avoid possible triggers
Whenever difficult behavior comes up, write down what happened, the time, and the date in a dedicated notebook. Also think about what was going on just before the behavior started and write that down as a possible trigger. Having everything in one notebook helps you find possible causes for the behavior.

For example, if your notes show that your older adult gets angry and starts calling you names around 4pm on most days, it could be because they haven’t eaten since noon and they’re hungry. They may not realize it or don’t know how to ask for food. To test your theory, try giving them a snack around 3:30pm to see if that helps prevent the outbursts.

4. Check for a UTI
A urinary tract infection (UTI) can put a lot of stress on your older adult’s immune system. That can cause sudden, unexplained behavior changes like difficult behaviors, more agitation, or being less responsive than usual.

5. Consider an adult day program
You might also consider enrolling your senior in an adult day program. These are places where your older adult would go for a half or full day of activities and socialization.

Interacting with other people and participating in a variety of enjoyable activities can reduce stress and help them sleep better. That can improve their overall behavior and reduce their need to act out.

Find a local adult day center through the Eldercare Locator (also at 1-800-677-1116) or through your local Area Agency on Aging.

6. Join a caregiver support group
Caregiver support groups are filled with people who really understand what you’re going through. It gives you an important outlet for stress — you can vent your frustrations so it will be easier to stay calm when your senior is being hurtful.

7. Lean on family, friends, and other help to get a break
Always being around the same person can make anyone annoyed and short-tempered. This goes for both you and your older adult.

Taking some time away can help both of you. Ask family and friends to take over for a few hours or hire an in-home caregiver. Taking regular breaks gives you a chance to take care of yourself and gives you both a little time away from each other.

Bottom line

Alzheimer’s and dementia are terrible brain diseases that can cause mean and hurtful behavior. Take a deep breath, remind yourself that it’s not personal, address immediate discomfort or fear, and try to find the cause behind the behavior.

Next, look for long-term solutions that will help you get the support and rest you need to keep your cool in tough situations like these.

ROSALYN NOTE:  I have been working on information on a form of dementia known as Frontotemporal Degeneration Dementia.  That is part of what I have.  It’s not well known, nor understood by most folks.  I’ll publish a series of blog posts related to that in the near future.

I will also continue sharing information I find on the internet that I believe may be helpful. If you want to get an email each time I post a blog (I write about other things, not just Alzheimer’s) find the “FOLLOW” box which is usually to the right hand side somewhere, enter your email and respond when the confirmation email is sent to you.

If you are in need of prayer for yourself, in your role as a caregiver, or if you have any specific questions please send me a comment with whatever information you want to share or ask about. I’ll say again that I’m not expert, but I probably experienced with my mom a lot of things you’re going through and will try my best to help. If I don’t know the answer I will tell you I don’t know. I’ll never judge, I’ve been judged enough to last a life time and would never do that to someone else. My email address is rosalyn@selu.edu if that is an easier way to communicate.

Until next time,

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04.11.17 – Some Things I Learned About Dementia – How Loved Ones with Dementia Benefit from Our Visits

Another great article from Alzheimers.net. This one is about the benefits to someone with Dementia when someone visits them. I, again, encourage you to click on the links in the article to read additional information. These links provide excellent additional information that isn’t covered in this brief post.

From my experience with mama, when she had visitors her whole expression and level of happiness went up. The most amazing time was when her friend Ms. Viola came to visit. Somehow their long time friendship sparked something that awakened mama’s previous self. She talked, she laughed, she was my mama of her younger years and I will always be thankful for that day and that visit. If your parent has older friends make an effort to get them to visit, it will make such a difference. Younger children also seem to awaken something that is precious to see.

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Caring for and visiting with someone who has Alzheimer’s disease can be emotionally and physically draining. In a recent survey, over 40% of people reported thinking it was “pointless” to stay in contact with a loved one in advanced dementia. How Loved Ones with Alzheimer's Benefit from Our Visits

However, the Alzheimer’s Society is encouraging family and friends to stay active in the lives of their loved ones, citing a strong emotional memory and long lasting benefits from socializing with loved ones.

Visits with Loved Ones with Dementia/Alzheimer’s

A recent survey found that 42% of the public think it’s pointless to stay in contact with loved ones who have Alzheimer’s after they are unable to recognize the faces of family and friends. Alzheimer’s advocates and researchers caution against this line of thinking, saying that even as the disease progresses, people with advanced dementia can still hold an emotional memory, meaning that they remember how something made them feel long after they have forgotten they event that brought those feelings.

After the celebration of the holidays and more time spent with family, people with Alzheimer’s can feel especially lonely in the beginning months of the new year. However, spending time with a loved one who has Alzheimer’s is important, even as the disease progresses. Chief Executive of Alzheimer’s Society Jeremy Hughes stated:

“After spending time with friends and family over the festive period, New Year can be a bleak and lonely time for people with dementia and their carers. It’s so important for people with dementia to feel connected throughout the year. Spending time with loved ones and taking part in meaningful activities can have a powerful and positive impact, even if they don’t remember the event itself. We’re urging people to get in touch with us and find out how we can help you stay connected.”

Another survey found that more than 50% of people with dementia were not participating in social activities and 64% said they felt isolated after receiving their diagnosis.

5 Ways Loved Ones with Dementia/Alzheimer’s Benefit from Visits

Research shows that even though a person with dementia may no longer recognize a loved one, their time together has a lasting, positive impact. Here are 5 reasons to continue visiting your loved one with dementia, even after it seems their dementia is too advanced to benefit from time together.

  1. They may recognize you even if they can not express it.
  2. Even if they are unable to remember your relationship, they may remember how often you visit.
  3. They may enjoy visits even if they can not remember your name or your relationship to them.
  4. Opportunities to socialize and visits can put your loved one in a better mood and help them relax.
  5. People with Alzheimer’s still have emotional memory, remembering how an event has made them feel after forgetting the details of the event.

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Rosalyn’s Notes: Some additional links to web pages concerning visiting the elderly with dementia:

http://www.aplaceformom.com/blog/2013-12-10-reasons-for-visiting-loved-ones/

http://www.dailymail.co.uk/health/article-1265547/Why-Alzheimer-victims-DO-feel-benefit-visits.html

https://www.alz.org/documents/heartofamerica/Visiting_Someone_with_Alzheimers.pdf

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Please come back next time when I’ll share more topics about dementia. If you want to get an email each time I post a blog (I write about other things, not just Alzheimer’s) find the “FOLLOW” box which is usually to the right hand side somewhere, enter your email and respond when the confirmation email is sent to you.

If you are in need of prayer for yourself, in your role as a caregiver, or if you have any specific questions please send me a comment with whatever information you want to share or ask about. I’ll say again that I’m not expert, but I probably experienced with my mom a lot of things you’re going through and will try my best to help. If I don’t know the answer I will tell you I don’t know. I’ll never judge, I’ve been judged enough to last a life time and would never do that to someone else. My email address is rosalyn@selu.edu if that is an easier way to communicate.

Until next time,

 

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04.06.17 Some Things I Learned About Dementia – 8 Things People with Dementia wish you wouldn’t say.

Speaking to or about a dementia patient as if he or she is not really a person is a pitfall many of us fall into. When our parents and grandparents lose their memory and, often, certain aspects of their personalities, it’s hard to regard them as the same people we once knew. It’s also nearly impossible to keep from correcting someone who has dementia, it’s just our nature to want to help “heal” our loved one’s memory by fixing the errors we hear in their words.

However, just because someone has dementia doesn’t mean they don’t have feelings. So think twice before you make any of these comments that may unintentionally cause more harm than good to a person with dementia.

8. “You said that already.”

You don’t really get how this disease works, do you?

medication blues

7. “Do you remember me?”

Way to put a person on the spot. Maybe I do and maybe I don’t. What’s it to you?

wrinkled face of senior woman

6. “Use your words.”

First of all, I’m not a three-year-old throwing a tantrum. I’m not refusing to use words. Sometimes I just CAN’T use words. If you know what I’m trying to say, why can’t you meet me halfway?

A grumpy old man

5. “No, no, I’m not Meredith.”

Are you sure you’re not Meredith? You look like Meredith. Mary, maybe? Marie? Emily? Can’t you just be Meredith for the day so I can be done guessing?

granportrait 12

 4. “That’s not what happened.”

Well then you tell the darn story. Am I not allowed to talk now just because I can’t keep my facts straight?

Old Man in Sunglasses

3. “Oh, actually, so-and-so passed away.”

Well thanks for raining down that giant tidal wave of grief on me in that blasted matter-of-fact tone. This is fantastic.

elderly woman

2. “I know you probably don’t remember, but…”

Again, thank you. I’m glad we’ve gotten past that murky point where we weren’t sure what I remembered and what I didn’t. Just assuming I don’t know what you’re talking about is much easier.

Elderly woman sticking out her tongue

1. “So what have you been doing lately?”

Skydiving in Egypt. Making bombs in my bathtub. Learning to juggle maracas while doing a handstand on horseback. Come on. Seriously? I have no idea what I’ve been doing lately besides sitting in this chair watching daytime soaps. Can’t you think of anything more interesting to add to this conversation?

Loneliness

So basically, try not to make a person with Alzheimer’s feel like they’re on trial or like they can’t do anything right or like you don’t care what they say. If you’re wondering what you can say to a person with Alzheimer’s, we have a few tips. Because Alzheimer’s patients tend to remember feelings better than actual facts, it’s more important to have a conversation that makes the person feel good than one that is completely accurate. Avoid correcting what they say and focus on things they’re more likely to remember, usually the more distant past. Ask them about their childhood or early adulthood, when they met their spouse, what their children were like as little kids, etcetera. And just go with the flow when they don’t make perfect sense.

By Elizabeth Nelson  from http://blog.thealzheimerssite.com

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Please come back next time when I’ll share more topics about dementia. If you want to get an email each time I post a blog (I write about other things, not just Alzheimer’s) find the “FOLLOW” box which is usually to the right hand side somewhere, enter your email and respond when the confirmation email is sent to you.

If you are in need of prayer for yourself, in your role as a caregiver, or if you have any specific questions please send me a comment with whatever information you want to share or ask about. I’ll say again that I’m not expert, but I probably experienced with my mom a lot of things you’re going through and will try my best to help. If I don’t know the answer I will tell you I don’t know. I’ll never judge, I’ve been judged enough to last a life time and would never do that to someone else. My email address is rosalyn@selu.edu if that is an easier way to communicate.

Until next time,

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Click on the links below to go there!

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